Wednesday, 31 October 2007

100th blog and halloween


This is the 100th blog. It is hard to believe I have written 100 entries.
I was visited by 5 students today who are making a 10min documentary about Mesothelioma and the affects on families. One of the students has lost her grandfather to it and has a clear interest in the subject.
All five are absolutley lovely.
They will be returning tomorrow to get some more coverage.

I went out trick or treating with my son this evening. He thoroughly enjoyed himself. We spent the evening with his school friend.
He wanted to be a werewolf and looked very fierce!
There was one house we went to that had a bucket of gunge with treats in. The children had to put their hands in and find the sweets, they loved it. My son wouldn't put his hand in, he said it was disgusting :)
One of the children said it was the best house they had gone to.
It was a lovely evening weather wise.

Tuesday, 30 October 2007

It's up!


The christmas tree I bought early this year is up!
It is something I did not think I would see. I set myself a challenge and with determination, have succeeded in seeing my tree up.
I have put it up early as I want to make the most of it.
It is lovely and I have also put on a couple of decorations I bought.
The next challenge is to enjoy a great Christmas with my family.
It is such a good feeling seeing my tree up.

Bank loan sharks

I have a loan with my bank which I took out a few years ago due to having a credit card. This was consolidated with some other debts and was agreed as at the time I didn't know I had cancer.
When I found out about Theo (my cancer) last year I asked the bank for a break in payments as I wanted to have a good Christmas with my children. I was given 6-9 months and thought it would be my last one.
They agreed and a plan was set up. I have since brought payments up to date with my interim payment and asked for the agreed plan to be removed.
This is now the second month that they have taken the actual payment and the agreed payment.
I am going into my bank with my McMillan nurse to sort it out.
This is so stressful. I was so upset about it yesterday as all payments going into my account will be swallowed up by the payments as I am now overrawn and they will try an charge me for that.

GGGggrrrrrrr!!!!!

I have sent a letter to the banks customer support centre detailing all the problems I am having. I have sinc had 2 letters from the bank. One asking for direct debit details to be added to the acc which is definatley not going to happen. The second is asking me for my ususl payment which has alreay been recieved by them.
I am waiting for a respose from the letter which ws sent by special delivery. It has to be signed for and is logged. It does cost a bit extar but is worth it for recording every detail of this issue.

Monday, 29 October 2007

Feeling sad

I am on the last of my rotational shift today and will have 3 days off before I start again.
I felt so sad today, feeling very sorry for myself. We had a fund raising awareness day at work. It was all geared to breast cancer, Which is a great charity and a wonderful thing to do.
I am not against any fund raising as it is needed and is not always supported by the goverment. I bought some raffle tickets and felt absolutely gutted. Why do I have to die? Why can't I and people with the same cancer as me be afforded the same chance as someone with another more high profile cancer?
Unfortunatly this cancer doesn't affect the rich and famous, if it did, it would be high profile too. That doesn't mean I want someone to go through all this because I don't but Mesothelioma and all asbestos diseases need a face and a voice, something that it can be related to.
Steve McQueen was a high profile sufferer and not a lot is heard about that.
I have decided to do raise awareness on Mesothelioma action day and hopefully get the same support as the breast cancer charity did. This isn't sour grapes, I just want to live as do others suffering from Mesothelioma and all associated asbestos diseases.

Sunday, 28 October 2007

Halloween at work


I had a good day at work today. I forgaot to put the clock an hour forward and ended up getting up an hour earlier.
That gave me a plenty of time to muck around with getting ready for work.
I dressed as a zombie bride and also helpe to do up the pod. I am a Tim Burton fan and copied his characters onto paper an stuck them on some skeletons. We hung them around the pod.
We had the corpse bride characters, Jack and Sally from nightmare before christmas and Beetljuice.
It was fun making it.

Saturday, 27 October 2007

Dress up at work

I am busy readying myself for a dress up day at work. I am dressing as a zombie bride and will take some pics to add here.
I would paint Theo (My cancer)on the outside of my costume but I think that a lot of people at work may find it in bad taste so I have changed my mind.
My ex is organising a raffle to raise money for June Hancock fund and for our son's school, Courtlands in Pymouth.
Hopefully he will get a good amount to share between both charities.

Friday, 26 October 2007

Yeast free diet

I am now looking into a yeast free diet.
I will add more information when I find it.
I am going to drastically change my diet now. That means no dairy, yeast (mainly bread), sugar, red meat (I didn't have that anyway being a vegetarian).
I am still taking my flaxseed granules and my vits which are Tesco's own immune defence pills, vege omega 3, pomegranate and b complex plus my one I have to take, thyroxin.
I feel very well and leaving out yeast is only going to help with my condition I hope.

I will not be able to have my occasional beer because of the yeast but that is no heart ache. I am sure I will cope and will find a yeast free alternative if there is such a thing!

Wednesday, 24 October 2007

Day out with my son

I went out to Plymouth museum with my youngest son today and it was lovely.

(the pic is our from Florida trip but it is one of my favourites and I wanted to include it)

He has been after a game for his Playstaion 2 console and was talking about it as we looked around the museum. We went for lunch and then went into the games shop and found it,
Thrilleville,
It's about creating a theme park and fun fare with roller coasters.
Way above my head : )
On the way back home we were talking about our day and after telling me his favourite part of the day was the museum, he asked me what was my favourite part. That was easy to answer, it was when I told him he could have his game today as an early birthday present.
His face lit up and he was all smiles and so pleased he didn't stop saying thankyou.
It was such a precious moment and well worth the money spent on the game.
Priceless.




James Halsall
I met a gentlman who has been featured on the front page of the local paper.
James Halsall, He has intestinal cancer and has been refused a treatment that could help him. I signed his petition and wished him good luck.

http://www.thisisplymouth.co.uk/displayNode.jsp?nodeId=181429&command=displayContent&sourceNode=229968&home=yes&more_nodeId1=133174&contentPK=18757481

It is so wrong to tell someone you can't have something that could save you.
Good luck to you James, I hope you get the treatment you need.

T'is the seaon to be fluey

I had my flu jab last week, just in time me thinks :)
In my work place, some of my team mates have been showing signs of the dreaded flu bug.

I have got my first of my 3 days off today and I can feel a little tickle at the back of my throat.
I am pumping myself full of vitamins and immune defence pills and taking my flaxseed granules and am hoping this will kick the backside out of the flu bug.
I am not feeling under the weather like I usually would and am hoping that the pills and diet have helped with the immune system.
I also have auto immune diseases, Hypothyroidism (under active thyroid) and Alopecia (hair loss) my head looks like a map of the world and I have lost my eyebrows since taking the vits.
That is the east of my worries, 11 wigs (not all at the same time!) and an eyebrow pencil puts that all in the back ground. My immune system will hopefully kill off the flu bug.
Theo (my tumour) has been very kind lately, he hasn't grumbled at all since the last time which was a couple of weeks ago and I think that was a temporary pain as it hasn't come back.
All in all it is going well. I have a couple of students coming around to see me tomorrow as they are doing a short documentary on Mesothelioma as one of them lost her grandfather to it.
I will add a blog with more info about the documentary. Hopefully they will do well with their project.

Saturday, 20 October 2007

Dr Etienne Callebout

I have been in touch with a couple who are going to see Dr Etienne Callebout.
Dr Callebout is a Doctor of Integrative Medicine which means he is works with the alternative treatment for cancer. He works in Harley street, there are costs involved.
Obviously I can't reccommend him as I have never met him or had any treatment from him and it is a good idea to consult with your oncologist or speacialist nurse before considering this therapy.
I am putting this information on the site as it maybe useful to others.
The link below details more about him and his work.

http://www.canceractive.com/page.php?n=378

http://healingdeva.com/coffee_enemas.htm

I am also adding some information about B17 as this crops up in lots of articles.

http://www.anticancerinfo.co.uk/everyone.htm

I hope that this will be of use.

Friday, 19 October 2007

Nutritional facts for Cancer Cells

I had some information sent to me concerning nutrition and cancer. I am detailing some of it in the blog but if anyone wants the full sheet, please email me and I will forward it on.
The title is Nutritional facts for Cancer Cells and is information from the John Hopkins Hospital in the USA.

An effective way to battle cancer is to starve the cancer cells by not feeding it with the foods it needs to multiply.

Milk causes the body to produce mucus, especially in the gastro-intestinal tract. Cancer feeds on mucus. By cutting off milk and substituting with unsweetened soya milk cancer cells are being starved.

Cancer cells thrive in an acid environment. A meat-based diet is acidic and it is best to eat fish, and a little chicken rather than beef or pork. Meat also contains livestock antibiotics, growth hormones and parasites, which are all harmful, especially to people with cancer

Avoid coffee, tea, and chocolate, which have high caffeine. Green tea is a better alternative and has cancer-fighting properties. Water-best to drink purified water, or filtered, to avoid known toxins and heavy metals in tap water.. Distilled water is acidic, avoid it.

Meat protein is difficult to digest and requires a lot of digestive enzymes. Undigested meat remaining in intestines become putrified and leads to more toxic buildup.

Sugar is a cancer-feeder. By cutting off sugar it cuts off one important food supply to the cancer cells. Sugar substitutes like NutraSweet, Equal, Spoonful, etc are made with Aspartame and it is harmful. A better natural substitute would be Manuka honey or molasses but only in very small amounts. Table salt has a chemical added to make it white in colour. Better alternative is Bragg's aminos or sea salt.

My Email is: Phu_phita@hotmail.com Please contact me if you want the full sheet.
Debbie

Thursday, 18 October 2007

Justice for Asbestos Families

Members of the Mick Knighton self help group ( http://mickknightonmesorf.mysite.wanadoo-members.co.uk/ ) are asking for the level of bereavement compensation paid to families of Mesothelioma victims in England and Wales to be increased to match payments currently made in Scotland.

Scotland currently pays £30,00 to spouses. Other family members can also qualify for a payment for losing their loved one. The payment is between £10,00 and £15,000 for each family member.

England and Wales pay £10,000 to the spouse, family members are not included in any compensation claim.
This meeds to be changed.
I fully back this petition and would ask that any family touched by Mesothelioma and losing a loved one to this disease signs it too. I have added a link below.

www.thompsons.law.co.uk/campaigns/justice-for-asbestos-families.htm

Thankyou for your much needed support.

Monday, 15 October 2007

Team work

I have done my 12 hours today and Jeanette and I gave the team some London eye biscuits.
I am busy making Halloween themed pictures to decorate our pod which is our work space.
Unfortunatly, my son, Richard, lost his job in Orange and he is now looking for another one. It was his own fault as he was not turning up for work.
Siobhan, my daughter has not been well and stayed home from college today. Kieran went to the doctors as he has excema on his leg and it has got quite sore he has some different cream to use.
All in all things are pretty normal....so much for the chilled weekend : )

Sunday, 14 October 2007

Mesothelioma UK The conference

The picture opposite is the conference room which was so professionally laid out. I have never been to a conference before so I was impressed. The speakers were all very informative and there was a lot of very useful information given and most of all, it was very posistive. http://www.mesothelioma.uk.com/
There was a welcome from
Helen Clayson who is the medical director at the Hospice of St Mary of Furness in Cumbria.
Mick Peake who is the National Lead clinician for lung cancer in Liecester was the first to speak.
He talked about Specialist Multi Disaplinary Teams (SMDT). This team would be made up of specialist doctors, surgeons, cancer specialist doctors, specialist nurses, doctors specialising in diagnosis from tissue specimens (histopathologists), physiotherapists, occupational therapists, psychologists, dieticians and any other health professionals. I found out that I can ask who my SMDT is. That will be a question I will take with me. He also said that by 2008 every hospital should have specialist MDTs as Plymouth already as a team as it is a hotspot for meso. I did question this as I had gone for a second opinion as I was not satisfied with the information my first Oncologist gave me.
Mick talked about improving services and also said that Mesothelioma had been included in the British Thoracic Society and Dept of health Lung cancer advisary groups. This was changed in Feb 2007. He asked everyone in the room to put pressure on local goverment were Mesothelioma is concerned.

Jeremy Steele Consultant in Oncology St Bartholomew's hospital, and chair of Mesothelioma UK explained how cancer created damaged genes, genes tell your hair to grow and that intersted me as I have Alopecia and wondered is that was the reason my hair comes out. He had a lot of very good information.

John Edwards is consultant thoracic surgeon northern general hospital, Sheffield. He urged everyone to write to thier primary care trusts and ask for funding for research as a matter of urgency. There is liitle or no funding for research into Mesothelioma and for trials and treatments. This pressure would hopefully urge the trusts to acknowledge that Mesothelioma is here to stay for the moment and it matters to the peoplre it is affecting.

Helen Clayton talked about minimising the symptons of Mesothelioma and maximising life. She was also very informative and was a great chair for the event. She kept all the speakers in check by letting them know how long they had left and was very professional.

Tony Whitsun is with the greater Manchester Asbestos victims support group and advisd the sufferers and their families about their rights with benefits. One benefit few of us knew about was the CONSTANT ATTENDANCE ALLOWANCE. This benefit overlaps DLA and AA and is available to anyone who claims Industrial industry Disablement benefit.

The link below has more information.


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.


Careres Allowance is means tested and you will lose it if you earn over £87 week. More info below.


I also found out that the John Hutton proposal to compensate all Meso sufferers with IIDB will be brought into force in early 2008.
At the moment anyone who has an asbestos related condition cannot get IIDB if they have :

* Enviromental Exsposure

*Self Employment

*Work/Clothes contamination through third party (family member)

The new rule will hopefully put an end to that rule.

Laurie Kazan-Allen described by Helen Clayton as a " TOXIC RADICAL" as she campaigns to get asbestos banned everywhere and showed some shocking pictures of asbestos factories, schools and wastelands with people standing/working with little or no protection.

One picture showed a manager asking the journalist "what are you worried about" as the manger stood beside his workers in an asbestos filled area. The worst countries are India, Pakistan, Kazakstan, Brazil and the shock one was CANADA. Canada supported the pro asbestos lobby.The link will give more information.


The first recorded case of Asbestos/Mesothelioma was in 1906.

Graham Sherlock Brown Graham is a surviver of 5 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.
Graham presented Meso UK with a cheque for £5,000 as he had a ball to celebrate his 5 th anniversary of survival.

He looked very well and it was good to see the positive side of Meso instead of the negative.

Natalie Doyle Nurse consultant rehabilitation royal marsdon, London. She talked about the psychological and emotional well being after diagnosis.

She also came out with some very inspirational quotes. "People first cancer second" and "Those who were not here will never know how it is to have survived". She was very helpful with comments and advice, she said that every building has an Asbestos register and anyone could ask to view it.

This was a wonderful,informative day and I learnt a lot more than I anticipated. I met a lot of wonderful people there, a lovely lady who was unfortunate to have had an Asbestos board in her class room and Heather and Alan who are a wonderful couple and
are regular readers of the website.
All the people there were so positive and focused, it is a great boost to find we are all striving for the same goal, to survive. I would like to say thanks to my friend Jeannette who was a great support. Also to Rick and Fiona cooper. Fiona is writing a paper on Mesothelioma and the information carers want/need and what is available. Anyone interested in talking to her can get in touch by emailing
Just a little foot note for FIONA
I am now Licenced to F*A*R*T !
One of the side affects with cancer is that the digestive system slows down and creates wind.
It also apparently makes the suffere sweat, I have not come across this at the moment.

I hope all the info has been helpful and please email me with any questions at

London Eye, The event.

We had a brilliant journey up to London, first class travel on the train. We got to Paddington and hired a taxi to take us to the hotel. We were staying in the hotel were the conference would take place the next day.
My friend was very excited when we got to the rom as she could see the Eye from the window.
We made our way to Waterloo station via the tube and walked towards the Eye, It was breath taking. It is a beautiful piece of architecture and very well placed. It doesn't impose its size on anything around it.
We found an Italian wine bar and had something to eat and talked about the reality as my friend had always wanted to travel on the London eye. We felt like a couple of school children left to misbehave.

We finished our meal and headed to the Eye. We met our waiter and were escorted to the pod.
We entered the pod and had our champagne, it was amazing.
We had a waiter who served us the champagne and were in a pod with around 12 other people. After the trip on the eye we went across the Millenium Bridge and walked around Covent garden which was full of people and buskers. there is some real raw talent in this place. My friend liked the Reggea busker. I really liked the Acoustic guitarist, he played and sang "something" by George Harrison, it was beautiful. We would loved to have taken them back to the hotel with us and listen to them all night. We made our way back to the hotel via rickshaw and tube. While on the tube we had another treat. A guy dresses like a teddy boy playing and singing "thats alright mama". He was great. I haven't ever seen this part of London, I liked it.
We settled down for the night and looked forward to the conference the next day.









Saturday, 6 October 2007

London Eye

A friend on my team in work and myself will be travelling up to London on 12th October to attend the patient and carer day on 13th October. We have decided to make the most of it and have booked to go on the London eye. We will have a glass of champagne as we travel.
We are both looking forward to it. I will add a blog and some pictures when we get back.
I will also add some info about the meeting as it wil definatley provide a lot of information.

Thursday, 4 October 2007

Mesothelioma Research

Fiona Cooper lost her father to Mesothelioma in 2003 and has a personal interest in the subject.
Earlier this year the Department of Health issued a framework on mesothelioma.
Historically rare, incidence of mesothelioma is rising. Within the framework there is a recommendation for improving the standard of information given to mesothelioma patients and their families. She approached Plymouth University and ask them to support this research project - to identify and meet the information needs of carers of people with mesothelioma.

This is a 3 year project and she is starting by gathering the thoughts of carers and sufferers across the country.

1. what information they need or needed to help those with mesothelioma.

2. What would help the carers deal with the effects on themselves.

She would welcome contact from anyone who feels they can contribute to this project. Please send an email and be as brief or as detailed as you like.

Fiona's email is : fiona.cooper1@pms.ac.uk

Thank you in an anticipation of your support.

Tuesday, 2 October 2007

Wheat Grass

I am adding wheat grass to the list of foods that have great properties. It contains vitamins, minerals and live enzymes and is one of natures superfoods.
It is a very powerful antioxidant. I have added a link. with more information.

http://www.internethealthlibrary.com/Plant-Remedies/wheatgrass.htm

I will be adding a link in the information part of the website that will include all foods that are suggested as helpful with well being.
Any other suggestions, please feel frre to email me at
Phu_phita@hotmail.com
And I will get back to you.
Thanks to all those who have been very supportive with this site and for the suggestions , it is greatly appreciated

Monday, 1 October 2007

Roger Lowe Campaign Meeting

I went to the Lowe families campaign meeting this evening (1st October 2007) which was very well attended.
It is so sad to see just how this terrible disease has touched so many people. Men who had unknowingly and loyaly, worked so hard to make sure they supported their families and in some cases gave a life sentence to themselves and their loved ones.
Seeing one poor man break down in tears made me want to say how wrong all of this is.
Still the goverment drags its heels on payments, widows who cannot get anything when they have lost their loved one and then find they lose again if they recieve incapacity benefit, men who have worked for their company for years and have retired, men who cannot claim anything as they have pleural plaque. It is a disgrace and needs to be fully highlighted.
Employers should be taking more responsibility in this area.
My situation is completely different, Secondary exposure, the new face of industrial disease.
I met an old school friend who has lost her sister the same way as I am going to lose my life.
She was unfortunate enough to have a father who worked for the MoD aswell.
At 46 years old, her sister lost her life through Mesothelioma and her family is in turmoil with sorting out the peices left behind. Isn't it enough to lose someone to this?
I don't want my children to have to worry about anything, I have to plan a funeral, My funeral, and also sort out all my finances to make sure they have no worries when I have gone.
I am so angry about this.
Wake up goverment, employers and any others who may well be squirming at the thought of being sued, start taking responsibility for the damage this mineral has done. This is never going to replace what the individual has lost, I know only too well about that, but it will help the family to sort out their finacial issues and not have the worry of how the family will cope.
My claim has been on going for 9-10 months now and the MoD promised in a statement that "Any claim would be dealt with quickly". This hasn't happened as they are still asking for more information that I don't always feel is relevant to the case.
The people with this disease do not have time to wait for employees to decide whether they can/cannot get it. They should be given it if they have the disease and a decent sum not some stupid amount that won't even cover the costs of living for 6 months, and what ever happened to this little ditty below?

http://www.dwp.gov.uk/mediacentre/pressreleases/2007/mar/hsc023-130307.asp

I have heard no more about it since. I brought this up at the meeting.
Hopefully this meeting will have brought Meso to the fore front again.