Friday, 31 October 2008
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
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
Tuesday, 28 October 2008
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
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.
Sunday, 26 October 2008
Kieran and I arrived back in Plymouth from Penzance at 3:50pm today. We have had a lovely few days with Sue.
We had a lovely day yesterday, we went to Paradise park which has exotic birds and has farm animals.
Saturday, 25 October 2008
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.
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
Wednesday, 22 October 2008
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
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
Sunday, 19 October 2008
Saturday, 18 October 2008
Friday, 17 October 2008
Wednesday, 15 October 2008
Tuesday, 14 October 2008
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!
If anyone hears of any others, please let me know and we will add them.
Monday, 13 October 2008
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
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
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 firstname.lastname@example.org
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
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
David has named his tumour Oma. anymore names for tumours? Email me and we will add a list of them.
Wednesday, 8 October 2008
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.
Tuesday, 7 October 2008
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 email@example.com
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
She introduced Kate Hill as the first speaker.
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?
"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.
* 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.
VATs (Video assisted thorascocopy) Talc Pleurodesis.
Debulk te tumour mass
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.
Geraldine Coombs - Solicitor
*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.
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.
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.
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.
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:
*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/
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.
*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.
E = Eating and excercising well, (Graham does pilates)
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
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 : )