Day 2....Happy Birthday Mr S...

We got up around 8:30 am after a very entertaining night and I felt a little the worse for wear : )It was Mr S's birthday and I gave him the present I had bought him. A bottle of red wine and a holder to put it in.

The wine holder is great and he seemed to love it. The link below is from a great website called I want one of those, I didn't know what to get Mr S and this was full of brilliant ideas.

http://www.iwantoneofthose.com/chain-wine-bottle-holder/index.html

We had breakfast and decided to check out and drive to Polperro. Mr S is very good at finding his way around and loves this part of the country.

We had a wander around Polperro and had a coffee in a pub. The views around this part of the country are breath taking.

The pub we went to was called Crumple horn and it was very quaint.

There was a water wheel outside, My dad loved water wheels so this made it a very easy choice for a coffee.

We then travelled into Looe and with Mr S on the journey, there will be a parking spot and a long walk to the place!

We walked along the coastal path and took in another breathtaking view.

We had another coffee in Looe. It is a while since I have been to Looe so it was goodto go back and see very little change in the place.

We then had the journey back to the car....I was a little concerned but didn't need to be. It was all up hill on the coastal path. We stopped a couple of times for me to catch my breath but it was a challenge and I conquered it.

I could not have done it last year with out stopping on every level so this was a great feeling.

We then travelled to a place called Rame head which is a very beautiful fishing spot and the most stunning church I have ever seen.

We sat in the car and drifted away with the view and the sea air. We didn't nap for long, we then travelled to another place in Cornwall.

It was Cawesand and Kingsand for an evening meal and as 2 great friends of mine live a few minutes away, Mr S agreed to us paying them a visit.

They are selling their beautiful house but staying in the area. After having a coffee, Mr S drove me home and It was a shame this had to end.

We have so much in common and he makes me smile.

I am sure we will arrange another away day, He needs it as he is busy with meetings and family. It was good to see Siobhan and Rich, Kieran is away and the house is very quiet with out him.

Thank you Mr S for a wonderful couple of days and I hope you had a even more wonderful birthday x x X x x

My wonderful weekend.

My weekend started when Mr S picked me up from my house with his wonderful pick up line.....Business?
We drove to Fowey and were there by 12:30. We stayed in the Fowey hotel which is absolutely beautiful. It is a victorian building that is still in keeping with the era. We were too early to book in s decided to go into Polruan which is the other side of the water.

We had a drink and a meal in a pub called the old ferry inn.

The view was stunning. We had a back drop of Fowey while we had our meal.

We sat and chatted and slowly made our way back to Fowey. The weather is gorgeous, we couldn't have picked a better time.

The view from the old ferry inn in Polruan

We went back to the hotel and booked ourselves into our room which was, again, beautiful. We had a great view of Polruan.

We chilled out and got ready to go out for the evening before having a meal in the hotel and watched as one of the waiters was pouring wine as a Butler should. The only criticism is that the service was very slow but the food was great.

We finished our meal and went for a walk around Fowey. Mr S is a great one for visiting every pub we can. We passed by a pub, I can't remember the name of it : ) and saw a poster advertising a man and his banjo. We both though it looked interesting and decided to return later. We had a pint in another pub that I can't remember the name of and were told that we would be back as the entertainment was not that great. We both decided we were going to go anyway. I am so glad we did.

The banjo man was great, he sang a lot of very old songs that my dad would have loved.

His website address is :

www.chucklefoot.co.uk

He offered up the banjo or guitar to someone to lay and this angel appeared. She was called Simone and I would compare her to a very gentle Eva Cassidy. She sang original songs and I was touched by the words. This picture s from the end of the evening. These 2 guys were with Simone they were lovely.

It was a great crowd in the pub with the banjo man playing Buddy Holly which I love and sang along to. I would pay for it the next day. I lost my voice!!!

Back from Fowey

I got back from Fowey (pronounced 'Foy') around 9:15 this evening and have had a really wonderful time with Mr S. We went to a pub last night and I was singing away and today have near on lost my voice.

It wasn't kareoke but I think we created our own. 

It was Mr S's birthday today and I think he has enjoyed his day. He is such a lovely, caring person although when he came to pick me up this morning, as I was waiting for him, He drove up in his car, rolled the window down and said "business?"

I said "shut up" and got in the car : )

He only said it because someone was waiting at the bus stop!

He is such good fun to be with and is some who enjoys life and living. He always has a smile on his face.

I will add some photos tomorrow as I am tired tonight and a little worse for wear as we got a little tiddly last night.

Happy Birthday Mr S, I hope you had a great day x

Woo hoo....3 days off.

I am off to Fowey tomorrow with Mr S. We are staying in the Fowey hotel for the night and will be back Monday.

I went out to eat with Siobhan and Rich this evening as I won't see them until Monday night. Kieran is with his dad and I am going to have some well earned time to myself with Mr S.

I have been really looking forward to it. It is such a shame we can't stay the 2 nights but he has family and work commitments that he cannot get out of.

I have been getting some very mild hot flushes since i stopped my HRT tablets. I am now taking some soya tablets and am hoping they stop the hot flushes.

The HRT pills were starting up my asthma and since i have stopped taking them, it has decreased.

I am going to write an article for the cancer active website and will add it when I have finished it.

I am going to take my mistletoe and off to bed and up ready in the morning for a great weekend.

one more day to go.

Today was good in work. My team are lovely and I love being a part of the "G" crew!!!

I spoke to a lady who I knew a while ago. She used to be my driving instructor many moons ago. Her brother has Mesothelioma in the abdomen and she is worried about him obviously. It was good to speak to her after so long but sad it has to be under these circumstances.

I wish I could make sure that every one got the chemoembolization treatment and everyone survived. Mesothelioma is one of the most crushing diseases anyone can be told they have.

Cancer is a terrible thing but to get it through someone Else's negligence makes me so angry.

If the insurer can be found then there will be a claim...if not...well, your on your own and left to suffer it alone. The treatment needs to come to the UK asap as some people are too ill to travel.

Here I go again on my soap box but I am very passionate about this.

On a good note, I have been invited as a guest to Chris Knighton's summer ball on May 

www.mickknightonmesorf.org/

I am so honoured to be asked and will do my very best to go.

Hopefully if all goes well with Mr S this weekend, he can go with me!!

Reply from Plymouth PCT.

My MP, Alison Seabeck has responded to a request to ask the PCT about trialling Chemoemblization in the UK. The response from the PCT is as I expected.

I am adding the details of the letter below.

" The theory around chemoembolization is that it enables chemotherapy drug concentrations in the tumour to reach higher levels than with standard intravenous chemotherapy because the drug is delivered directly to the tumour and does not spread as easily throughout the body (which may reduce some of the side effects compared with standard chemotherapy).

In  addition the small particles used to embolise (block) the tumour blood vessels may decrease the blood flow to the tumour  (which can cause it to shrink) and can help contain the chemotherapy in direct contact with the tumour for a longer period of time (which in some cases may increase the therapeutic effect).

Chemoembolization is a treatment approach which is mainly been used in the treatment of liver cancer and the use of the approach for other cancers such as pleural mesothelioma is still experimental and the benefits and risks therefore are not well known. When chemoembolization is used in liver cancer, it may be used together with systemic chemotherapy or radiotherapy and one requirement is that the tumour is localised so that it can be adequately targeted (for tumours which are diffuse it is difficult to do so).

The benefits in the treatment of liver cancer vary with some trials reporting a tumour response of 5% in patients, static disease in about 50% and the progression of disease despite treatment in the remainder.

The potential side effects of chemoembolization depend on which drug is used in the procedure and in studies and in studies including patients with liver cancer these have included the common side effects such as Nausea and vomiting, hair loss, fatigue, anaemia, immunosuppression and infections (despite the use of prophylactic antibiotics)although they are usually reduced compared with in systemic treatment. In addition haematomas may develop following the catheterisation which is performed (usually in the groin) to be able to deliver the drug to the tumour, emboli can lodge in the wrong place and deprive normal tissue of blood and local side effects may lead to liver failure and fatalities.

Professor Vogl and his team appear to have published some information about chemoembolization in malignant lung conditions but very few patients with pleural mesothelioma have been included and published trials do not compare chemoembolization with other treatment options such as standard chemotherapy.

Although individual patients may have responded well in Professor Vogl's research the results for a large number of patients need to be published in comparison with other treatments (which in some patients can result in a survival of several years following diagnosis) and is likely that clinicians in the UK would be reluctant to initiate similar separate trials until more such results (both on risks and benefits) are available.

Any trials would also obviously require regulatory approvals from UK ethics committees and MHRA. In addition, through the process of NICE `appraising the fairly new chemotherapy drug permatraxed as one of the drugs used for pleural mesothelioma patients (which was subsequently recommended in 2008) the treatment options for these patients would have been reviewed with input from UK experts  and specialist groups such as the British Thoracic Oncology Group and the international and British Mesothelioma interest groups, 

It therefore seems reasonable to expect that the potential for using chemoembolization compared with other treatments in pleural mesothelioma patients would have been discussed by relevant individuals at the time.

In summary, there is little evidence of use of this treatment inpatients with malignat lung conditions and unlikely to be further clinical trials until more evidence emerges to suggest a need (and in fact the PCT would not drive this as it would be a specialist clinical issue).

There would have been a review of available treatments as part of the process leading to permetrexed being recommended in 2008. Side effects are likely to be related to the particular chemotherapy in use as well as the risk of bleeding/clotting which may lead to other problems or even fatality.

I hope this helps to clarify the situation with regard to this treatment but as always, please come back to us if further information is required".

An interesting read isn't it. I don't think it rules out the treatment, they just want more evidence and that is what a trial is for....isn't it?

The drug I had in Germany wasn't permetrexed, it was Cisplatin and Gemzar.

I will be returning a reply to Mr John Richards at :

Plymouth Teaching Primary care trust,

Chief executives office,

Building one,

Derriford business park,

Brest Road,

Plymouth,

PL6 5QZ.

Another busy one.

I got more of the goods up to the lock up today.
Rich helped me with it.
I then went off to lunch with my friend, Carolyn, she has been feeling a little low lately and taking her out to lunch seemed to cheer her up. She has had a stressful few weeks as she wasn't sure if her illness was due to cancer, thankfully it wasn't. She is reeling from the after shock and has been quite depressed.
After lunch it was back home to do the rest of the room. Trying to fix up bunk beds while refereeing my sons is very grating and the air was blue. Considering that one is nearly 20 and knows how to irritate the 12 year old autistic one makes for a colourful afternoon!!

I got the children pizza again as I was too busy to make a meal. The pizza was a treat for Kieran as he is away from us for over a week as he is going on a trip with school next week.
I am back to work tomorrow and Kieran will be with his dad.

Great news for Steph...she has had another 15% shrinkage with her tumour.
Prof Vogl has also said that she doesn't have any new tumours growing.
Great news !!!

A very busy day today.

Rich and I sorted out the big room today. I have ordered bunk beds for the boys as it will make the room look bigger... well that is the intention. We have been taking our  overflow items to a lock up to get rid of the clutter. I had to hire a bigger cabinet as the smaller one was so full. I was surprised how Rich and I got it done in so little time. The first time I went over to it, I forgot the little card to de-activate the alarm and had to go all the way back home!

We have got most of the room sorted out but I decided to call it a day at 7:50pm as I was feeling tired and cracked open a well earned bottle of wine. I am having a glass or 2 to chill out and a curry which is being delivered as I have been too  busy to make a meal. I am going to fix up the bunk beds tomorrow.  

I still have Kieran's bag to pack for next week. I am back to work on Thursday and am looking forward to Sunday with Mr S!

He has been busy too, he has booked us a hotel in Fowey. I love Fowey, it is a beautiful place. He has the check list all worked out and it sounds wonderful.

Lovely day yesterday

I enjoyed lunch with Mr S yesterday. We can have one night away next week as he has work and family commitments. It is his birthday next Monday and I intend to make a good day of it. It doesn't matter how many days away we have, it will be good to be with him and only him.
I will be busy getting Kieran's suit case packed to go away next week and back to work on Thursday.



Well done Carolyn!



I am going out to lunch with my friend, Carolyn tomorrow as she has had the All clear from the hospital. She was so worried she had cancer and has had a letter from the hospital advising her she hasn't.
She is so relieved and we are going to celebrate with a bite to eat.
Lets hope the sun keeps shining, that is metaphorically as well : )

AMD report.

At long last I have done the action mesothelioma day report. Some of it is missing from the end og the meeting as Siobhna and I were so tired after seeing the lovely Robery Smith and the Cure the night before.


Action Mesothelioma day 2009 Gateshead civic centre.

The meetings was opened by the Deputy Lord Mayor and there was a 2 minute silence for Maureen Chaplin who had passed away a few days before.
It was a very emotional start to the meeting as Maureen had hoped to see out her time as Mayor but never got her wish.
Dr Tim Peel - Patron Mick Knighton Mesothelioma Research Fund (MKMRF)

Action Mesothelioma Day was held at the house of Commons in Feb 2007 and a Mesothelioma Charter was drawn up. The new draft charter has been published alongside the coroners injustice bill.
Dr Peel also talked about the Coroners Justice bill which is about to be put into place. This will allow families who have lost someone not go through the rigorous investigations when the death is outside of coroners office hours.
He said there should be better care for families when the sufferer dies and there should be a more sensitive management in respect of this.
He also talked about NCARD- national centre for asbestos research and there was a petition in support of this.

Dr Rob Adcock

A health disaster - Dr Alcock thanked Dr Peel and Chris Knighton for allowing him to speak at the meeting.
He said that the Mesothelioma epidemic continues to expand and will be a problem over the next 25 years.
He also talked about asbestos and the knowledge that was available in the 1800’s which shows there was awareness around then of what causes the disease.
The first regulations were in 1931 and in 1955 links between asbestos and lung cancer were apparent.
In 1064 there was a link between Mesothelioma and asbestos and with there being a 20-30 year latency period ( the period between exposure and showing signs of the cancer) this was always going to be an epidemic.
In January 2005 all use of asbestos in the EU was banned. It was used in roofing, lagging, break lining, flooring and much more due to its fire retardancy.
Asbestos causes a range of diseases.

* Pleural plaque
* Pleuritous ( inflammation)
* Asbestosis
* Lung Cancer
* Mesothelioma

Dr Alcock explained what happens with normal, healthy lungs and compared it with the lung/s when diseased with Mesothelioma.
He also explained how asbestos got into the lungs.
Pleural plaque indicates that the individual had been exposed to asbestos. A fluid build up is usually the first sign of Mesothelioma.
Asbestosis stiffens the lungs and there is progressive breathlessness.
Anyone who has worked with or come in contact with asbestos has the risk of getting Mesothelioma.
This would include, builders, laggers. electricians, Steel works, decorators, painters .
At this point the battery ran out on the computer and there was a flurry of activity to get another one set up to show the slides on the screen..
The treatments for Mesothelioma are a long way from a gure as it is so resistant to anything. It can grow out of the chest and under the skin and sometimes spreading further.
Disturbingly, Mesothelioma is getting more common. Exposures as children or apprentices gives a latency period of 20-30 years which will develop in late adulthood.
There is a world wide Mesothelioma epidemic predicted.
From diagnosis to death the average survival rate is 1 year.
Companies took short cuts to save money.

Debbie Brewer - I did my talk and told how I had been diagnosed in November 2006. I have since had treatment in Germany which has shrunk my tumour by 73% and I am now on a research programme. For more information log onto
http://www.mesothelioma-and-me.com/

Jan Egerton - Cryoalblation
Jan has had Mesothelioma for 8 years and was diagnosed when she was 44 yrs old. She had a VATs op ( Video assisted Thoracoscopic) and was given 6 - 12 months to live.
She had chemo and radio therapy and I 2006 there was evidence of an improvement. She had a wonderful quote “the problem with the disease is it doesn’t know when to quit, and it should realise that I won’t quit either”. She has her gall bladder removed because of chest pains but the pains continued and she had chemotherapy. In 2007 Jan had chemo again as the chemo had grown. In August 2007 she contacted the USA about treatments and in 2008 went back again to have radio frequency cryoalblation.
Rods are pushed into the bdy and the tumour is frozen. Jan found this to be painful around the kidneys.
There are 12,000 procedures performed in the USA and it is not recognised as a standard treatment in the UK at the moment.
October 2008 saw the cancer grow again and she returned to the USA only to be told to go back and see Dr John Edwards in the UK.
January 2009 (6 weeks ago) Jan had an operation to decort the lung. The diaphram and left pericardium was also removed. She showed a picture of the tumour that was removed and it was something to behold.

Mary Hepton - Mary’s husband died in March 2008. She had been a student nurse and had first come across Mesothelioma in this job. 43 years later she found she was dealing with it personally. She had a quote as well “It is said hard work never killed anyone, How wrong that is”.
The government gives no funding for Mesothelioma research so Mary started a fund in memory of her husband Ron. She has raised £2,500 for the Snowdrop fund.
10,000 Snowdrops were planted in a memorial garden.
Mary has turned something so devastating into a positive and like many others, is determined to see this disease eradicated.

Dave Anderson NCARD ( National Centre for Asbestos Related Disease)
Dave Anderson is a member of parliament and is angered at the way society is treatning people with Mesothelioma. His quote was that the insurerers are “getting away with murder”.
He talked about pleural plaque sufferers not being compensated for their injuries and this was “a disgrace”.
Dave urged people to speak to their MP’s and get them making a noise in the government. He was also very proud to be part of the push to get NICE (I hate that term as they are not) accepting Alimta on the NHS and is very passionate about why people have been exposed.
The NCARD, National Centre for Asbestos Related Disease, should be a priority and the government responsibility to make NCARD a reality as it is in Australia.
Employers and insurance companies need to listen. Sufferers of Asbestos related diseases should not have to rely on state benefits as it should never have happened to them in the first place.
Dr Albi Ryan.
Dr Ryan talked about the cells that cause cancer and the ones that don’t. It was very scientific but basically you need FR Alpha to bring in the drugs more efficiently.B15 and B16 in Mesothelioma patients are deleted these cells are needed to fight cancer.
Some cells are resistant while some are more sensitive to chemotherapy, why?
Any data collected at present is too small to determine any results.

Andrea Bayles and her father who is a, meso sufferer, presented a cheque to Chris Knighton in aid of MKMRF.
That raised over £15,000 , well done Andrea and dad!

British Lung Foundation advised that a recent survey they did on their website determined that 40% of Mesothelioma patients are NOT offered vital end of life care.
Doreen Hall - McMillan
She has been called an angel of mercy, the lady with the bible, a cloud down from god and many other clichés . Doreen advised that there was a stigma attached to McMillan nurses due to advertising campaigns as many think that they are there for the last days of life.
The McMillan nurses are there for

* Palliative care
* Focus on quality of life.
*Look at the person and not the disease.
*focus on the patient and family.

The patients are in charge and they have treatment options.
She talked about Liverpool Care Pathway that has in house medication and communication is good between all health professionals. This type of care should be in every constituency.
Ian McFall - Thompson’s solicitors.
Ian talked about the twin towers and the advertising campaign done by asbestos companies 30 years ago.
One of the slogans was : When your life depends on it ,you use asbestos“.
30 years later The mayor of Gateshead, Maureen Chaplin lost her life.
Deaths from Mesothelioma throughout the 1980’s and 90’s has increased. Asbestos is not a problem from the past. 3 campaigns have come together to protect Mesothelioma sufferers.
October 2008 saw the launch of the diffuse Mesothelioma scheme which insures everyone diagnosed will benefit within 6 weeks but some victims lost out.
A trigger test case was taken to the high court and was successful in a 9 week trial that determined injury is sustained when exposed and no when Mesothelioma develops.
The Employers liability insurance bureau had 6,000 requests to trace insurers had no response. Since 1999 over half couldn’t identify insurers.
Ian made everyone aware it was a criminal offence to drive without insurance. If you have a car you have to be insured. Full compensation is paid for injuries with a car. It is a statutory obligation to have insurance Thompson’s are calling for something similar with asbestos employers. It would mean sufferers would get a payout if insurers cannot be traced.
Thompson’s would donate towards the national centre for asbestos related disease. Together Dr’s, nurses, campaigners, fund raisers and patients can succeed.

David Brierly talked about asbestos in schools. This is one subject that is terrible to listen to.
There are so many innocence who have been affected this way and cannot claim thing. Teachers and pupils are exposed. I didn’t hear all f David’s talk as I had to leave.
I hope this has been helpful .

Jade Goody

First of all I want to say how sad it was to hear that Jade Goody had passed away in her sleep yesterday at 3:55am.

I didn't want to add it yesterday as the tribute on yesterday blog was dedicted to Ken and his family. I feel so sorry for her 2 little boys who are now motherless but they will be given the best chance I am sure with their dad.

The media needs to leave them alone and I am sure that Jeff will not let them become a focus anymore.

I am so grateful for having my life as I was so frightened to leave my babies. I tried so hard to get a message to Jade anbout the treatment as it may have helped but got no response from the Jade camp.

I had a good 3 days at work after sorting out my differences. I am looking forward to having a couple of days away in Cornwall with Mr S. It will give us some quality time together and a chance to discuss where we go from here.

Remembering Ken

I have had an email from Joanne who's dad, Ken had been to Germany for one chemoembolization treatment.

Ken had Chemoembolization but didn't make the second.

He passed away yesterday, 20th March 2009.

Scans had shown that the tumour appeared to have reduced a little.

He was very positive about the treatment and did get some hope.

It is so sad to hear that he would never get back to Germany for his second treatment.

I really wish that everyone could get my results and it breaks my heart when we lose someone.

This blog is dedicated to Ken and his family.

I know I can say for all on Meso and me that our hearts go out to Joanne and her family.

Ken has made a difference and he will help bring the treatment to the UK

Thank you Ken ..... there is another star shining bright and lighting our way.

The return of Cloth ears

I am taking cloth ears home today, he came to stay with me when my friend, Rachel, was feeling a little lonely. She has had cloth ears since she was a baby.

As it is mothers day on Sunday, I suggested to cloth ears that he came home with me and we went shopping to get Rachel something.

He has said yes and wil be staying over night in my house.

Kieran is with his dad this weekend, he will be away for a few days from 30th March. He is going to an adventure centre in Devon.

He is looking forward to going and has been to have a look at the place.

I am off to get ready for work and get a little bed ready for cloth ears : )

A good day in work.

I was a little apprehensive about work this morning and have had a word with my boss and sorted out my issues.
I have some time off in April and am hoping to visit Pat in Worcestershire who is very special to me.
She and her husband, Tony put me on my road to Germany. They found all the links for the Mistletoe and the chemoembolization treatment.
I feel a lot better about it now as I wasn't happy about not having a break from work I feel I need to chill out and enjoy some time away from work and Germany.
I am back to Germany in June. I have got some holiday in July, I am arranging my 50th birthday party and would like to take some time away with my older children as Kieran is going to Florida ...again!!!
His dad is taking him to Disney world, he went to Disneyland Paris last year with his dad and Disney world Florida the year before.
I hope he doesn't expect it every year!

I saw Mr S last night. We talked about getting away and he has said he will sort it out. I think we may be going to Cornwall for a couple of days. I am not sure when I am seeing him next but I hope it is very soon. His birthday is on 30th March. I have no idea what to get for him.

Happier now

I have had a lovely day after all. I have chilled out to how I was feeling this morning. The smear test wasn't as bad as I prepared myself for and will be processed and the results will be available in about 6 weeks. I don't think there is anything to worry about.

I went to Kieran's old school this morning and did some silk painting with the children. They enjoyed painting easter pictures.

Rich went out to sign back on with the DSS and look for a job and Siobhan went to college.

I stayed home and did a little bit of house work.

I loved Kieran's old school as they did so much for him after he left mainstream school.

I like helping them out and took a few pictures of things I have done in the past. I painted an undersea mural on the wall in the playground for them and recreated a picture of Dolphins on a wall in the chill out room that had been drawn by one of the pupils. It was a lovely afternoon, Kieran was told he could have a look around and that is what he did!
Mr S should be over this afternoon, late evening as he wanted to see me and discuss getting away for a couple days.

Not happy today

I did my mistletoe last night. All well with that.
I will be going back to work tomorrow and really don't want to. I have found 2 small patches of Alopecia and am sure it is due to the stress of work and home. I am feeling very pressured in work at the moment and will be discussing issues with my boss. I was fine until I moved teams and feel that because of my results, maybe they think I am cured.
I wish I was but that may never happen.
I didn't want to mess up my great results by stressing over work which brings me to home. I am not going to jeopardise my health for work and am prepared to give it up if I can't change teams or get some agreement about the pressure added to my job at the moment. I have 3 children to support and 2 of them should be supporting themselves. I have been too soft because of all that has happened and feel now is the time they should be moving on.
I love them so much and hate having a nag at them.
Rich hasn't had a job for a while and Siobhan is at college but could get a part time job to support herself. I also want to sell the house and am struggling to balance the house work with the family and work.
I need to have a break from all of it and haven't recharged from all of last years events.
At least the sun is out though, and I am still here, I shouldn't really be complaining.
I am going off for smear test soon, I cancelled my last one as I didn't see the point of having it as things were dire anyway.
Hopefully the sun will cheer things up and the children will forgive me for nagging.
Tomorrow I will be having a meeting if I can arrange it and decide what to do about work, I don't want to leave as I have many good friends there but I am not going to make myself ill over it.

700th post !!!

There have been 700 posts since I started this blog in 2006. So much has changed since then and at the moment, it is all for the good.
Last night was great. I really enjoyed the band (the picture isn't that good I am afraid as it was so busy) and more that that, I enjoyed the company of Mr S. It never seems to last though, we both feel that we need more time together. Circumstances don't allow us to have time on our own for long.
We have decided to have a couple days to ourselves at the end of the month. All I have to do is make sure Kieran is catered for and it shouldn't be a problem as the days we discussed are my days off.

We need some quality time together and as I don't know what the future holds for me, I want to take as many opportunities with Mr S and my children to enjoy myself.

I am so happy at the moment and I really hope that it isn't all cut short by Theo rearing his head again. I want him to be happy in Germany and happy to let me have this moment that Mr S and I missed out on over 25 years ago as we were with other partners.
Neither Mr S or I regret what has happened in that time because we have our wonderful children. As I said to Mr S last night, We will have great for making up for lost time.

Conservative stance on drugs for cancer.

I have had an email which dictates what the conservatives would like to see happen with cancer drugs.

"We will speed up access to cancer drugs by ensuring that the National Institute for Health and Clinical Excellence (NICE) does its appraisal of new drugs at the same time as drugs are licensed so that the UK will be among the first to introduce effective treatments. We will also reform the way drugs are priced so that all new treatments that are clinically effective are made available, putting an end to the situation whereby cancer drugs that are routinely available in the rest of Europe are not provided in this country".

The link below gives more information about the proposal.

http://www.conservatives.com/News/News_stories/2008/11/Conservative_proposals_would_speed_up_access_to_new_drugs.aspx

Steve McQueen

It was good to see that Steve McQueen's widow has spoken out about Mesothelioma.
Steve after going to Mexico for treatment for his Mesothelioma and had a heart attack and died while recieving the treatment.

http://blogs.mirror.co.uk/asbestos-campaign/

The Mirror has done a great feature about it. They have campaigned through the newspaper over the last couple of weeks and it has been great for the cause.
There is also a petition on the number 10 website to implement the changes that are being called for. Sign the petition through the link below.

http://petitions.number10.gov.uk/AsbestosTimebomb/


The Mirror is supporting the call for :

A £10million National Centre for Asbestos Related Disease to find better treatment, alleviate suffering and work on cures.
Compensation reinstated for victims of "pleural plaques" - scars on lungs caused by asbestos - after it was scrapped two years ago.

Fair and equal compensation for asbestos disease sufferers who can't trace the insurers of the bosses who exposed them, through a new Employers' Liability Insurance Bureau paid for by the insurance industry.

A public register of all asbestos surveys carried out on public buildings.
The Health and Safety Executive must be given the resources to meet its own targets for inspecting asbestos removal work.

Well done Mirror team, this is just what the cause needs.

Happy St Patrick's day

Happy St Patrick's day!!
I am usually at home or come home from work and have a Guiness to celebrate this time of year.
I love a drop of Guiness and this just gives me an excuse to have one.
For the first time I am going out to celebrate the day with Mr S. I missed him at the weekend and am looking forward to seeing him this evening.
He loves Irish music and is going to see Mad Dog Macree at Kitty O'hanlans in the city centre.
He always asks for my approval and doesn't need to.
I love most music anyway so am easily pleased with what I listen to.
I do have my favourites though, Robert Smith and the cure, Muse, Foo Fighters, Brett Anderson (he was originally the singer with Suede and has an amazing voice) and Mr Sidney Vicious...one of my all time favourites.

The Children are happy, they are having take-a-way tonight which is always a good tool to bargain with : ) Although I don't have to bargain with them, they are wonderful.

3 days over

I am off now for 3 days and i must say I have been looking forward to it.

I am off out tomorrow with Mr S. The children are going to have take-a-way which they enjoy as a treat if I am going out.

I have booked myself in for a smear test on Thursday as I haven't had one for a while. When I got the diagnosis I didn't see the point of having a smear test as I was, according to the UK medical profession, on my way out. As things are looking up, I have decided to have it.

Talking about smear tests, I haven't had any response about the German treatment from the Jade Goody camp. I can only think that they are accepting what she has been told.

It is such a shame as this treatment could help. I don't know what else to do.

It is a terrible thing to happen to someone so young and with 2 lovely little boys.

CT juice picture

I am adding this great picture that Jeanette took while I was waiting for my CT scan in Germany.

I had 2 cups of the stuff to drink. I did ask if one was for Jeanette but the nurse wasn't having any of it. I had a little pang of emotion as the cups it comes in has the lovely design of the intestines, liver, kidneys and other inner organs. It is the same cup Erna and I had when we imagined we were drinking sex on the beach last May. She has since passed away but made my first chemo session more fun than it should have been.

I do regret not meeting up with her again as we corresponded by email. She was wonderful and although I only met her for a brief moment, I miss her.

The CT fluid smelt like Perno, it certainly didn't taste like it, the imagination comes into play again though so I can drink it with the utmost pleasure.

I didn't see Mr S last night as his mum was taken into hospital. I hope all is ok and we will catch up tomorrow if she is well enough.

Work is not so good at the moment. I really do feel I need a break but my time off has been refused. I had a word with my bosses boss but the holidays I can have are not until July and I don't think I can last that long with out a break.

I am very happy with my results but I feel after last years busy schedule and the work routine, I haven't had a lot of time to myself.

1st day over

I went to work today and had a chorus of well done from my team mates. They are very supportive and make it easier to work. I did put in for my hols and that has been refused so I will be having words about that tomorrow. I feel I need some time to myself as I had such a busy year last year and things have got a lot better but I do want to get some time for myself and to get the house sorted out.

I am feeling very light in my steps as I am so happy to have bet Mr S again after more than 25 years.
There is a little story... not sure if I have told it on here or not...I apologise if I have.
I was going out with my first husband at the time and Mr S was with his girlfriend. We went to a pub in Devon, I think it was called the Ebb tide but I can't be sure. A tune was playing on the Juke box, " For ever and ever", Mr S insisted it was the Bay city rollers, I corrected him and told him it was Slik, the band Midge Ure was in before Ultravox. He argued that it wasn't Slik and made a bet with me. I could have his triumph Bonneville and all he owned if he was wrong....oh no...... he was so wrong. I had won every thing as it was slik.
I have added a lik to the video and song below.

http://www.youtube.com/watch?v=i_mkV0gKISo

That song is so lovely I have always loved the words in it and never forgotten our bet. I have reminded him about it, How things catch up when you least expect it.

Out with the old and in with the new !!!

I am back to work today after a very eventful few days.

20% of Theo moving out and a new man moving in.

Theo seems  to be having a great time in Germany and I am looking forward to working with Prof Vogl to find out why this has been so successful.

We are both certain the Mistletoe has done a great job but it will be interesting to find out.

I am going back to Germany in June for another scan and find out if Theo has moved his shoes out yet. they are designer ones so I don't think he will be leaving them behind.

I had lunch with Mr S yesterday which was lovely. We had a quick lunch as I had an appointment with my GP. I will be seeing Mr S briefly on Sunday as I am not home until 8:30pm. I am seeing him again on Tuesday, St Patrick's day, and will be going to see an Irish band called Mad Dog Macree at an Irish bar in Plymouth.

I haven't been out to  a St Patrick's day event before so this will be an eye opener.

Mr S loves Irish music and I have to admit, it is foot tappingly good.

He is so sweet and has told me that he is here for me now so any issues arising he will be there.

He has even offered to go to Germany which is lovely, I am still going to go with Jeanette as she has been great and it wouldn't be right to say she was not going any more.

I told my GP about the results I had and he was pleased to hear it. I also told him that Prof Vogl has said I have a narrow Oesophagus, he didn't really jump on that one, just saying that that was me and to accept that or words to that effect.

If I feel the need to explore it more, I will ask him. I will also speak to my oncologist.

Well...i am off to get ready for work. Happy days : )

One last thing.... Happy Birthday to Suzi who has been a follower of the blogs from the early days. She lost her dad through Meso and has been a great strength behind finding links and supporting me through all issues. Have a great day Suzi, Enjoy x x x

 

Radio Devon interview

I went into the Radio Devon studios and had an interview on Ian Calvert's show this morning. He was very interested in my story as he had lost a close friend to Meso. It is so heart breaking to hear my news knowing that some one some where would have had a chance at life if they had known about the German treatment. This makes me more determined to carry on my campaign to get this treatment in the UK.

Ian very kindly said I could have a picture for the website. He is wearing his PJ's as it is red nose day and a very fine pair of legs he has!

Talking of red nose day, Kieran has gone to school dressed as Harry Hill!!

He has his money and I am sure he will have fun today.

I am meeting Mr S for lunch and I am so looking forward to that. I have a Dr's appointment this afternoon as Prof Vogl has said I have a narrow oesophagus and I wan tthat investigated as I am still spluttering on drinks. I also want to talk about the HRT as I haven't taken it since I stupidly took it before Breakfast a few weeks ago and made myself ill.

My Family

My children and I went out for a meal this evening and celebrated my 20% reduction with Theo.

We had a lovely time, the table cloth was covered with miscellaneous things including Dr Robotnik from Sonic ( Pingas) his favourite saying I think! There was a questions session asked by Kieran and Richard drew his cheesy grin stick people. Siobhan, ever the amazing artist, had the best and most artistic piece of the cloth.

Kieran had his hair spiked with Gel, he was helped by his brother, Richard.

Rich had his hair spiked, he is so handsome!!!

It s a shame but Siobhan is very reluctant to have her picture taken so I don't take any as I think she thinks they will all end up on this blog or facebook. Either way, it is because I am so proud of my babies and love to show them to the world.

I appreciate how she feels, hence there is only Rich and Kieran.

Tomorrow I will be having lunch with Mr S. I have missed him so much today, I am looking forward to seeing him again.

Also tomorrow, I am on BBC Radio Devon at 8:00am with Ian Calvert, It will be a live broadcast.

Celebrating tonight.

I went out last night to celebrate my news that Theo had taken another 20% of his goods with him to Germany.
He is really enjoying Germany and has settled very well there.
I went out with Mr S and we had a superb night. We went for a drink in his favourite Irish bar and then off to the Jazz club on the barbican. There was a wonderful band playing, I don't know their name, they were very good and we had a boogie to the sounds. We talked about how we felt about each other and found that we had both had feelings for each other 25 years ago. I think we are now an item!
He has been so lovely, a very respectful person, someone who's company I always enjoyed.
After the Jazz club, we went to another bar that played 70's and 80's music. We were there until it closed, we were the last in the building!
We then got a taxi home, I dropped him off first, we both felt we didn't want the evening to end but it had to as we both have our family and work commitments.
It was a lovely evening and so good to have some male company.
I am seeing him again on Friday for lunch and we will be celebrating St Patrick's day on Tuesday at Kitty O'hanlan's as one of Mr S's favourite bands, Mad dog Macree, are playing.

James has finished the bathroom!!! I rang him yesterday and said I needed it done as there was water damage starting on my ceiling in the kitchen. He finished it yesterday an we can now think about getting the house up for sale.

This evening I am going out to eat with the children to celebrate my news. That is going to be great, they like to go to a place in the Warner village in Plymouth as the table clothes are white paper and are for drawing on. We usually have a truly colourful table cloth !!

Thoughts and memories

Sue and Pat have been on my mind the past few days.

Sue lost her son, Michel to Mesothelioma in March last year and Pat lost Tony.
Pat and Tony were very helpful with finding Prof Vogl and the mistletoe and I that makes me feel very close to Pat.

It is awful to go through the first anniversaries. Another friend, Sharon is feeling the same as she lost her lovely Peter to Meso.

All the results I have had the past few days have been for them and people like them.


I am hoping that the positive feedback I have had from the Dr in Barts and from Prof Vogl will start opening doors in this country.

I know how I feel every August when I remember my lovely dad and his last days. It breaks my heart to think that these people have lost their lives when they should still be here.

Today's blog is dedicated to those who are not here physically but I am sure they are sitting on the shoulders of their loved ones and guiding them through this difficult time.

More Good News!!!

I read my emails today and had one from a Dr in London.

He wanted to know if Prof Vogl would come to the UK and "present his technique".

This is wonderful as it feels like all the hard work that has been done by a lot of people has been listened to.

I am sure he will come to the UK as he wants this treatment available as much as I do.

I am back home now and will arrange to go back to Germany in 3 months as Prof Vogl wants to monitor the tumour and what it is doing.

He is one amazing man and it an absolute privilege to have met him and be a part of something that could save so many lives that should not be lost in the first place.

Mr S sent a text yesterday saying he wanted to see me before I left for Germany. I left at 2:00am so I couldn't see him : (

He has been so sweet. I will be seeing him soon though, to celebrate my news. I will be having a meal out with the children tomorrow night and will celebrate with them. They are so wonderful and give me the fight to do this...it is all for them....I love them so much and do not want to leave them...looks like I won't be going anywhere for a while : )

I had a lovely bunch of flowers and a card from Kieran and his dad. Kieran had drawn a big star and wrote 73% in it. It was so sweet.

Good news from Germany!!

Anxiety over!!! I saw Professor Vogl at around 5:00pm and he said the Theo has shrunk another 20%!!

I am thrilled and so is Jeanette. We left for Bristol at 3:00am this morning. We haven't rested properly but are now in the hotel room chilling out.

Professor Vogl was lovely,as usual. He told me I am officially his lab rat and he wants to see me again in 3 months time as he is monitoring what Theo is doing.

He wants to learn why I am getting such a good response and whether the Mistletoe is a large part of the treatment.

Jeanette and I went into the Irish bar to celebrate the news.

She has now got her jammies on and reading the paper, I may have a soak in the bath and chill out too.

A good day me thinks... thanks again for the flowers Becky and a very happy birthday to Pat, the lady who was so instrumental in finding this procedure.

Early night

I have done my shift today with a few tears involved. My team were very supportive. I should be feeling so happy as I have had such a great result, I feel so stupid having this going through my mind as I know in my heart all will be ok. 

I have had such great benefits from the treatment and don't want Theo to move back in. I am going to see the Prof tomorrow and hope I get good news. If he tells me there is no change, I will be happy, I am not going to expect more of a miracle than I have had already.

I have had an email from Chris who is continuing to do well with his treatment. He has just returned after having a 3rd treatment for his Meso. Well done Chris. I have looked at Becky's flowers today and am smiling through the tears.

Thank you for all the support and emails from you wonderful people. 

Suzi....Mr s's hugs are wonderful.....but not physical...yet!!! I know when he hugs me he holds me so tight that I feel like he doesn't want to let me go, and I am not sure if I want him to.

He was so lovely last week, said he accepts me, warts (or wigs) and all. 

I will add my news on here tomorrow and I know I will be happy with the Prof telling me there is no change. 

A Message for Theo

Please Theo, stay were you are, you haven't bothered me for so long. I will see you tomorrow and hopefully you will take the last bits of your belongings.

I don't mind you leaving a little in storage, I hope we can continue to be good friends and we still have our agreement.

Debbie x x

Tomorrow is Germany!!

I have just arrived at work and for the first time, am writing my blog from here. I felt I had to do it. I have just driven in, tears rolling down my face as I am so frightened about tomorrow. I am determined to win this battle but this demon is still in my head, pounding away at me. I am so scared that Theo has moved back in, I don't feel like he has as I feel really well. The problem being I have never felt ill all through this journey. I am going to stay in work as if I go home there will be more thinking time.

I don't want to die....I want to stay here with my family.

I don't feel the time is right. I really hope I have a good result tomorrow, I probably will and as Steph said, I have conquered so much already and given myself extra time. I am not sure how much extra but it a lot more than I was given before.
I am going to get a coffee now and hope no-one asks me how I am as I am about to burst and they will get very wet.
I could do with one of Mr S's big, fat, Juicy hugs right now.

Good night out

I had a really good night out with Mr S last night. We went to a Irish bar called Kitty's where an Irish band were playing and I have to admit that they were really good.

While out and about I met Diana (pictured below) , she works for the local paper and has followed my story from the first feature through to the treatments. It was good to see her socially rather than her doing a job. Mr S and I stayed there for quite a while before moving onto a curry house as poor Mr S hadn't had anything to eat and never told me!

I got back home around 1:00am and didn't have a posse of upset children to deal with. All were tucked up in bed. I suppose I wont feel like I have been grounded this time : )

It is lovely to know how much they care though.

Kieran and I are off out to see his friend today and tomorrow I am back to work, then Germany on Monday and back Tuesday.

I wasn't going to see Mr S until after the Germany as I was feeling so low and I didn't want to get miserable when out with him. I am so glad I changed my mind. He makes me feel so special, It was what I needed. I will definitely be seeing him again when I come back.

A lovely day

I went to see Kieran in his assembly today, he was performing in his classes version of Location, location,location. He did very well, his poor friend had to dress up as Kirsty and was not impressed although he did look good as a little girl : )

I then went into town and picked up my laptop. I had a Mac book which was damaged last year as my son, Richard, had left a glass of squash on it and Shadow, our cat a that time, knocked it over. That damaged the keyboard. The one I had a s a replacement was damaged by the airline on my last trip home from Germany. The screen was cracked so the nice man at the Apple shop in the city centre managed to salvage 1 laptop from 2. It is all fixed!!!

I then picked Siobhan up from college and went home. I had arranged to meet a lady and her husband for lunch so headed out to the "Dartmoor Diner" to meet them. She had been going to Germany as well and we must have just missed each other. It was so lovely to talk to her and her husband and hear about their journey. She is looking really well ad has great support with her husband. I am sure I will be seeing them again.

This evening I am out with Mr S. I was going to leave it until after the German trip and seeing Prof Vogl but I decided it would be good to see him as he cheers me up. He is such good company.

I am part way through the report for Action Mesothelioma Day. I do apologise for the delay but I will knuckle down and finish it tomorrow.

Sunday I am back to work and then Monday, Germany. I am looking forward to seeing Professor Vogl and finding out the tumour has shrunk a little more. If it has made the 60% mark I will be happy.

Thank you Becky.

I had a lovely surprise today. My boss called me and said there were some flowers delivered at work for me today and would I go and pick them up as I was not working today.

They were beautiful, Sunflowers, my favourite flowers, and they were from Becky who's dad, John has had some success with the German treatment. He has 10% shrinkage with his tumour.

It was such a lovely thing to do.

Thank you so much Becky and I hope your dad, John gets even more results when he goes back.

Not a bad day at work.

I feel a lot better this evening, better than I did this morning, I was feeling quite low and miserable.
I had quite a good day in work and a couple of the guys, David and Terry, have made me an honorary member of the G crew which I am accepting with pride : )
I don't want anyone to feel they can't email me as I am happy to speak to anyone about my journey, I was feeling a little low due to the CT scan coming up.
I get like this every time and when I have the facts in front of me, good or bad, I can then move on and deal with it.
Theo has been very quiet and I will be checking he is happy in Germany.
It will be good to see Professor Vogl again and spend some time with my wonderful friend, Jeanette, what would I do with out her.
I am now off for 3 days and go back Sunday and off to Germany Monday. I am seriously thinking of cutting down my hours at work so my personal life and my health are not suffering.

Still feeling low

I feel like I want to get away from Mesothelioma at the moment.
I said at the beginning of this journey that I didn't have time for cancer and that is still how I feel.
Trying to juggle a full time job, a family and being on my own doing it all is really hard. I shouldn't be having a gripe as I should be so happy with the results I have got so far but I still get angry with why I have got this disease.
I feel like I need a clean break of everything as I don't think I have had a good break from any of it.
I am happy to email people with information and help them get the results they have, that is now turning into a full time job and I have become a support group.
If I could give up my job, I would. This is not an option as I have a family to support, Siobhan is at college, Richard is still looking for a job and little Kieran is a dependant anyway.
Well...I am going to stop griping now and get ready for work. I am hopefully going to take some time off in April and visit Pat who was very instrumental in me finding the German treatment.
I will be fine after I get the results from Prof Vogl but at the moment I feel my time is precious and am still hoping that Theo hasn't decided to come back.

The demons are coming!!!

I am so anxious today, the usual demons in my head...I am seeing Professor Vogl next week and I am so frightened he will say Theo has returned.
I have a pain in my back, not the side that Theo resided in.
He was in the left and this is in the right.
I am almost sure it isn't Meso but it is there in my mind, once the CT scan is out of the way and I speak to the Prof, I am sure it will go away.
This is when it hits me the most, I want to run away from it All and I feel so trapped.
There have been so many good results and Theo has been good to me, I am so hoping he is still being a good friend and enjoying Germany.
I will find out on the 9th, until then, the horrors will continue.

Fly tipping Asbestos!

I have just seen the local news and seen a piece about asbestos roofing.
It is the corrugated asbestos roofing and someone has dumped it were members of the public and wildlife will be exposed to it.
It has been dumped 4 times in 10 days!
I find this so shameful in this day and age and with the publicity about Mesothelioma.
It isn't like cutting a finger, this stuff will cause damage in years to come.
Some people are so ignorant of the dangers and don't care who they hurt.
I hope Plymouth city council find out who did it and fine them big time.
There is no excuse, there are companies that will dispose of it, for a charge, but the costs are even higher if the services are not used.
For more information about disposing of asbestos, use the link below.

http://www.hse.gov.uk/asbestos/hiddenkiller/index.htm

Daily mirror asbestos centre campaign.

The Daily mirror are backing a campaign for the government to fund a £10million National Centre for Asbestos Related Disease (NCARD).

http://blogs.mirror.co.uk/asbestos-campaign/2009/03/our-5-demands.html

The link above contains more information.
Ian McFall, Thompsons solicitors, fully backs this and discussed it on Friday at the AMD meeting in Gateshead.
I will add a full report of the event on Thurdsay as I am working until Wednesday.



BACK TO WORK

I went back to work today. I am still a little unwell due to taking my HRT pill the wrong way at the weekend. My own stupid fault, I took it with out water and without something to eat first. I was quite unwell on Saturday and yesterday, today is better but I still feel a little yucky and have a very mild pain in my back which is better than it was yesterday.
Kieran brought home some lodgers yesterday. We had 2 snails (African) he had to look after.
All they do is slug and slide around a tank. The kittens wanted to play but it would not have been a wise move : )
The snails live in Kieran's school and it was his turn to care for them....aahhhh.

back home today

Siobhan and I are travelling back home today. We have met some lovely people like Chris and Dennis, Chris, like me, got exposed to asbestos through her dad's clothes. Dennis, her husband was very kind and took Siobhan and I to the hotel. I met Andrea and her dad who is a very passionate about how patients are treated and the information given. Chris Knighton of course who is always wonderful and Jan, a lady who only 6 weeks ago had a major operation. She was a speaker as well and talked about Cryoalbation which was done in the USA. It was a very interesting meeting and when I get back home, I will write out a report of the day.

We left the meeting early as we were so tired.
I would like to have stayed at the meetings as there were a lot of people I didn't get to meet but Family always comes first. Siobhan and I went shopping yesterday and couldn't work out what was going n with Newcastle town centre. We are *spoiled in Plymouth as our shops are all together were as Newcastle it is spread about. I did a stupid thing in the morning and took my tablets before I had something to eat and I don't think the HRT one liked it as I made myself ill and was like it all day.
We met up with Andrea again and chatted for quite a long time about her and her dad, She loves him so much and Will do anything to keep him from losing his life.
It is still pretty new to her family and the shock of it all took it's toll on her.

Action Mesotheloma Day was organised well by Chris Knighton with some really good speakers. Jackie did the snowdrop planting in Plymouth (Roger Lowe Campaign), Diane and her sister did the dove release in Hampshire (Hasag), Kim and Mike had theirs in Leeds (June Hancock Fund).
I really hope that the day will give a lot more publicity to the cause and raise awareness about Mesothelioma and Asbestos.

* Thanks to Suzi for pointing out that I said Siobhan and I were soiled in Plymouth it was meant to be spoiled : )