Wednesday, 31 December 2008
It has been a roller coaster year for me. The year started with an appointment with my oncologist who told me to be grateful for the life I have had and to go home and enjoy what I had left to having a 53% reduction in my tumour.
I also want to remember the wonderful people who didn't get the opportunity I have had and lost their lives to mesothelioma.
A very special mention to Pat who lost Tony early this year as without them, I wouldn't have found the information about chemoembolization and mistletoe. Not a day goes by when I don't think of them and thank them for what they have done. There will always be a special place here for them.
Other's who passed away in 2008 and will always be special to this site are :
Michel Hall : March 6th 2008
Tony Webb : March 2008
Mandy Kaminskas : May 2008
Erna Hienmann : August 1st 2008 *
John Sachs : September 18th 2008
Tony Todd : November 16th 2008
Philip Branch : December 18th 2008
*Erna had her chemoembolization treatment the same time as my first treatment and we met on the ward afterwards and swapped emails and chatted. She was a wonderful lady who I regret not meeting again in different circumstances. My best memory is drinking our water on the ward and pretending we were on a beach drinking cocktails, sex on the beach, it was lovely.
My thoughts go out to the families of the above and wish them a happy as can be expected new year.
My nose is bunged up and I can't move in my bed. Kieran came in for a cuddle, which is lovely. He insists on saying "hello mum" over and over again until I wake up. I know he means well and wants a cuddle but I can't back to sleep. The kittens are on the bed as well. Stork is suckling the pillow and his sloppy, drooly sounds are emulated by the silence. Cookie is at the foot of the bed.
I am squashed up against the wall.....isn't life grand.
I came down to make myself a hot drink and then will battle my way back into my bed.
I had an email from a lady in Australia who has Mesothelioma and has had a successful pregnancy. Anita Steiner has her own blog which she updates.
Tomorrow , or today I should say is new years eve. The children and I shall be donning our outfits and having some fun.
Tuesday, 30 December 2008
I had another email today asking for info about the treatment. The emails I hae recieved have been wonderful and very positive. It is such a good feeling to give something back and to give some hope to the wonderful people who want to live and I am sure will end up being long term friends.
I went out to my friend Helen's this evening for a little bite to eat and met up with Caroline. It was lovely, the children enjoyed getting together, they will be back to school next week.
The children and I have our fancy dress party tomorrow, it is a very exclusive event!
We will be dressing as fictional detectives.....should be interesting!!!
Monday, 29 December 2008
Jena has already been for her first treatment this month and will get her results next month and I am waiting in anticipation for a good result.
Chris and Nicky have also contacted Park Attwood clinic about Mistletoe treatment which helps with boosting the immune system and with symptoms of chemo therapy.
All contact information for the treatments are on the links on the main blog site.
Chemoembolisation : A post card from Theo.
Mistletoe therapy : The Mistletoe diaries.
I am so pleased to be a part of their survival and hope they get the results and hope that I have got from it.
Any one who wants information or would just like to talk can contact me by email
or call me on the number on the contact page.
I can help with answering questions about my procedure and experiences but I cannot help with medical information.
Good luck to all of you and all the best for 2009, lets make this the year we change the views on treatments for Mesothelioma and give the UK sufferers something to hope for.
"This British Lung Foundation survey has been developed for people with mesothelioma, their family members and people who have lost a loved one to the disease. We would be very grateful if you would take the time to fill out this survey and tell us about your experiences. This survey will help us to understand the needs of people who have been affected by mesothelioma. It will also form our campaigning messages for next year’s Action Mesothelioma Day."
Would you please take a few minutes of your precious time to help with the survey.
Richard was late for work this morning and was told not to bother coming in. He was working at a fish factory, I know he can do better than that. At least we won't have the smell of raw fish around any more.
I think he is dissappointed but he was finding it hard to get to the place. He was getting up at 4:30 am to get ready and coming home around 3pm. He was then on his computer until 10:30-11pm which was too much.
He has a couple of jobs to look into.
I am going to chill out today and stay home as I have wasing to catch up on.
Yeasterday was interesing at work. I wasn't on the phones, I was learning something new. It was a nice change. I look forward to doing it again.
Sunday, 28 December 2008
I took my mistletoe last night and I think that is why I was having the cold shivers. It is kicking the backside out of this cold. I was ill again as the immune system clears out the body to concentrate on fighting the flu virus.
I am working today although I did not feel like it. I will manage though as I am off for 4 days so it is bearable.
Well.....I must go and get ready for work. Hopefully I will have a better night tonight.
Yesterday I was ill as the immune system clears out the body when it is busy....hence the illness in the bathroom yesterday.
I took did my jab last night and hopefully that will kick the flu into shape.
It is good as it shows the the mistletoe is doing what it should and is fighting the enemy.
I went to work yesterday and was shattered when I came home. I need a magic housekeeper fairy for when I am away as she would welcome me into a tidy house, not the student hostel it has become.
New year will bring in new rules. There will be a big shake up here.
Well.....I am off to bed to try and sleep as there is another busy day at the office today....hope I can stay awake long enough : )
Friday, 26 December 2008
Hopefully, we will all pull together and help out as there are 3 adults in this house and 1 12 year old.
There is no reason for our house to look like a student hostel.
Any way....it has been a lovely Christmas and Kieran and I will be visiting his friend later today. He also wants to do a puppet show....should be interesting !!
Thursday, 25 December 2008
Wednesday, 24 December 2008
Tuesday, 23 December 2008
Monday, 22 December 2008
I then went with Kieran to the local Theatre, we watched Lesley Joseph and local west country comedian Matt Slack absolutely mess up there lines and take abuse from the children in the audience. The pantomime was brilliant, at one point the fairy godmother, Lesley Joseph, said that Cinderella was the most beautiful girl in the kingdom, well not as beautiful as the fairy godmother though. A little voice from the audience corrected the fairy godmother and told her she wasn't beautiful, she was ugly, which had the actors laughing and messing up their lines.
Kieran didn't stop laughing, he wasn't too keen on going as he says Cinderella was for girls, he soon changed his mind and is now looking forward to next years pantomime.
After that I went home and dropped Kieran and went out to work to collect my secret Santa gift and it is lovely. It is a snowman mug with a lid and the most gorgeous little spoon.
I love it and look forward to putting my feet up with my new mug and drinking chocolate. My day didn't finish there, I got home after visiting work only to find that my son then wanted me to go with him to his friends house to pick up a computer. It is now 21:52pm and I have managed to sit down and make myself something to eat. ....... Phew!!!
Sunday, 21 December 2008
We then went back to Helen's house for a bite to eat and to let the boys play the wii games Kieran had received for his birthday.
Kieran and I are going on a christmas train tour today. He is looking forward to it.
Not sure how long we will stay there. We are out to his friends this afternoon. His friends mum, Helen, are going to a childrens carol service with the salvation army. She has invited Kieran and I along, sounds lovely.
Saturday, 20 December 2008
Friday, 19 December 2008
BBC TV news 17th December 2008. Unfortunatley the BBC called Dr Vogl Josef, his name is Thomas and they got the procedure wrong. It isn't chemo imobilisation. At leats there is some publicity for the campaign. Link below:
Thursday, 18 December 2008
I went out for a meal on Tuesday night with some very good and, I hate this word, old, friends of mine. We have known eachother for 22 years and have kept in touch although we don't see each other as much as we would like to. It was lovely to catch up and celebrate my great news with them.
Wednesday, 17 December 2008
TV and papers.
Monday, 15 December 2008
I had my last procedure done on 12th December and Professor Vogl told me it had shrunk again....another 10%!
That is 53% gone now....and it didn't stop there!!
When Jeanette and I went to see him for the consultation later that day, he said that the tumour was dead....sorry Theo....thats a bit harsh.... I asked him if it wold come back and he said it may not.
I was overjoyed and am still elated by the news. I cannot take it in at the moment.
I said I wanted to get the procedure over to the UK and he said I would have a better chance of getting a rocket on the moon.....I love a challenge...so I am looking for my rocket.
I cannot believe that Jeanette and I have finished our adventure ad we have got such a wonderful result. Jeanette has been a great support to me. She has done so much, leaving her family to support me.
I hope she knows that Iappreciate what she has done for me.
My next appointment will be in March for a scan. I will travel to Germany and see Professor Vogl who is following up on the progress. By then the tumour should be virtually gone....yay!
Sunday, 14 December 2008
I still can't believe the news....53% gone.....Partial remission and Theo may not come back.
He has emptied his cupborads and taken all his belongings with him. He obviously wanted to get settled before Christmas.....No problem there.
I still feel a little nauseaus and tired which is normal but so very happy.
I also had another great suprise...I can see Kieran's school play. He is doing it again tomorrow for the little children and I am going to see it.
I am getting a sick note as well that needs to go into work. Jeanette and her partner, Mark have been wonderful. Taking me to Bristol and back and Jeanette has been a true friend, she hasn't left my side through all this treatment.
She has given up so much for me and I really appreciate it. Thanks Jeanette.
Well..... I am off to bed now....all back to normal tomorrow, with one small difference....I have a furture to look forward to!!!
Friday, 12 December 2008
Wednesday, 10 December 2008
I went to Trago Mills in Newton Abbot with my sister, Wendy and my friend, Helen. It was wonderful.
Tuesday, 9 December 2008
Monday, 8 December 2008
Well....I have to go and take him to work now...the kittens are running around after each other.
Siobhan and Kieran are tucked up nice and warm and fast asleep.....Thats were Rich and I should be : (
Sunday, 7 December 2008
I have included some pictures today of the kittens being naughty. Stork is trying to get the advent calendar open and Cookie just generally messing around with the table runner.
They went in the garden today, un supervised and have found their way home afterwards.
I feel so protective over them as I have had 3 cats knocked down by cars and that worries me.
They are so beautiful and I don't want to lose them.
Thursday, 4 December 2008
Tuesday, 2 December 2008
Monday, 1 December 2008
One of my friends came with me and enjoyed the morning. I showed them my DVD that Gary and Kristy made and they loved it.
I dropped my friend home and picked up Richard as he has a job interview this afternoon....yay!!
He needed to get a new pair of trousers and I needed a few things. When we got back, Siobhan had gone out and silly me....I hadn't taken my key. I tracked her down, she had gone out for lunch with her boyfriend. Rich and I went out and got the key, we got back around 2:35pm.
We got home, had a quick bite to eat and waited for Kieran to get home.
I have got to sort out the washing as I am back to work tomorrow.
My sister has volunteered to help me out with the housework once a week....she is a star. She will be in on Wednesday and has strict orders not to touch the cat litter tray or the bedrooms as that is too much to ask. Just getting the basics done is the main thing.
I can't believe that I will be off to Germany next week for my final treatment. It has to be the final one as funds are very low.
I am looking forward to seeing Christmas in Frankfurt, I know Jeanette is too and I hope she is feeling better as she has been off sick.
Sunday, 30 November 2008
I took my mistletoe last night. I upped the dosage to 40mg so it is now 40mg twice a week. I am still convinced that the mistletoe has had a lot to do with my result as it has boosted my immune system and makes me feel so well.
Saturday, 29 November 2008
I met up with somewonderful people who had had a few drinks and words and compliments were flowing from their mouths about how inspirational I was.....I find that hard to believe as I am only doing what anyone would do i my position....I want to live.
It was very sweet of them to say it though. I picked up my team mate Debbie around 9:45 as she was working late and met up with my other friend, Rae.
We left at 12:30am and I took Debbie home, She was a little the worse for wear but at least she got a little home ok.
It was so cold last night, I was dreading getting out of my little car to walk back to my house.....BBBbbbrrrrrrrr!!
Friday, 28 November 2008
Theo was playing up a bit but that soon died down. I got back to sleep only to be disturbed by Storkie and his usual suckling. I called him Bitty and got a whack from his paw.....Sure he thinks he is human!
Eventually got back to sleep and then THE ALARM WENT OFF : ( !!!
When I did get up and dressed, I had breakfast and went out to the car....she wouldn't start...flat battery as it was so cold.
I called the RAC at 8:33am and was told that a mechanic would be with me by 9:05am.....I was on my way to get a cake for Kieran as he has a school fete today and he is going to school in his civilian clothes and payment is 1 cake.
The RAC man....a very, very nice man..... turned up around 8:30am.....Brilliant!!!
He jump started my car and said the battery was knackered, it was a second hand battery from a couple of weeks ago. He said he could put in a new one at a cost with a 3 year warranty. He told me about other dealership that sell cheaper batteries but I said I would have one from him as it would be more convenient.
Irt was all fitted and woring by 8:50am....wow......excellent. I went back in doors and put my face on and went off to the car and on the way realised I ADN'T TAKEN MY PILLS, HRT AND THYROID PLUS MY SUPPLEMENTS!!!
GGgggrrrrr..... Richard put Kieran on his bus and i got a cake from the shop, raced around to Kieran's school and then off to work.....phew!!
I finished work at 5:oopm today and am going to get ready for the Orange party tonight. Kieran doesn't want to go to his school fete as the Jonas brothers are on TV and Camp Rock is on as well.
At least I have time to get ready now....should be a good night. Theo will be accompanying me and will hopefully be too busy with socialising and won't bother me.
My friend, Jeanette hasn't been well and has been off work a couple of days. Get well soon jeanette and see you soon x x x.
Right, I am off to get ready........bye!
Thursday, 27 November 2008
I have been watching I'm a celebrity ...get me out of here and I ust admit Timmy Mallet hasn't dissappointed me....he is still an annoying idiot.
I am sure the public will keep him in as he annoys the others.
I enjoyed watching Johnny Lydon on a previous one a she was hilarious and I would like to see him on TV a lot more.
He and Sid Vicious were my early punk heros.
Kieran has Mufti day tomorrow and he is supposed to take in a cake....I forgot to get one so that means get going to the shop in the morning.
Hopefully it won't be likeTuesday morning!!!
Wednesday, 26 November 2008
Tuesday, 25 November 2008
I am going to wear a white catsuit with blue and white frills on the legs and arms. Wendy is going to wear a yellow tunic and shorts. We are going to look so cool!
The children and I have sorted out our differences, I think! Rich cleared up the kitchen and even sorted out the kitchen cupboard!
I am back to work tomorrow. I have to do my Mistletoe tonight, 40mg, I am going to up the dosage at the weekend as I only take 20mg at the moment but I don't get many side affects from it.
I am absolutely sure that the Mistletoe plays a large part in my tumour shrinking.
Theo has been very quiet lately, I like it that way and I hope he has got his tree up in Germany and is ready for the festive season, Go for it Theo, have a great time.
I am going out with my sister today which will be nice. Siobhan has gone to college as I had a word with her last night. She shouted from her room last night telling me to turn the TV down. I asked her to come down and tell me in a proper manner as I am the only one who works in the house and support everyone and I will have the TV as loud as I want to.
I hope we can work things out, it is like most families, they all fall out at certain points and usually make it up.
I want them to understand how hard I work to support them all and we do have a good life at the moment.
I don't feel like this all the time but it has come to a head as the housework and washing is a joke at times. I feel I am the only one who wants a tidy house. Coming home to a dirty wok, pots and pans and dishes in the sink and no meal made after a hard day makes me feel so disrespected.
I try and make a meal for them when they are busy but it isn't always reciprocated.
I am going to ice the cake tonight with Kieran and will take some to work for my friend, Barbs who loves Christmas cake. I hope it passes her inspection!!
I must remember not to have too many rum and cokes when making Christmas cake!
Monday, 24 November 2008
I was trying to talk to him about getting a job and that I want to know that my children can support themselves when it got a bit out of hand and I started to have a few tears. I told him that I didn't bring my babies into this world to leave them and how I never asked for all this.
Siobhan, I would like to think, will be self sufficient as, hopefully, she is at college and has her boyfriend who will help her and support her. Rich has no one and needs to get a job. I don't think either of them realise the seriousness of the situation and they don't talk about it and it is crushing. It is the most difficult subject I will ever approach with my children.
The only one I should be concerned with is Kieran.
I don't know what to say or how to approach it.
Yes I have had a good result from Germany and I hope it continues, but I don't think either of them realise how I really feel.
I would like a lot more support with the chores around the house as when I am working, I come home to a student hostel!
I find it really difficult being the mum and dad in this family.
Some of this is the rum talking, had a couple this evening, but maybe it needs to be said !
Sunday, 23 November 2008
Kieran and I will be making our Christmas cakes today which should be fun.
The kittens are crazy and enjoy chasing each other around the house to Kieran's delight.
He has really got into his Jonas brothers music. He has also said he likes high school musical 3 and is going to see it with is dad.
I am so pleased to see him develop his own personality and tell what he enjoys listening to.
Saturday, 22 November 2008
I will find out next week if I can go.
I have found more information about the court case from yesterday as it was reported in my local paper.
I hope that this ruling is recognised and the insurers don't win their appeal. They squeal and squirm their way out of acknowledging the liability.
All we need now is the pleural plaque illness recognised as there should be a payment available to anyone who pleural plaque, why should anyone have to wait until they get Meso.
My dad was one of the luckier ones, if I can phrase it that way, as he got a payment before it was abololished.
Friday, 21 November 2008
When I came home, I had a phne call from a lady who had been to see Professor Vogl. He is going to help her and she will be returning to Germany for her frst procedure next week. That has absolutely made my day. If feels so good to have made a difference to someone so much that they may get some extra time on this earth. I really hope it goes well for her and she gets the results I have had.
I had a DVD sent to me yesterday from Gary and Kristy and it s beautiful. It is a short film about the affects of Mesothelioma on a family and I was very impressed with it. I showed a couple of my friends and they were in tears as was I.
And just one more thing to add......
Thursday, 20 November 2008
I have loved the cure forever but have never seen them live and now it is happening!!!!
I am so excited, I have had the best christmas gift ever with the tumour shrinking and now I am doing another wonderful thing.
Thanks Siobhan.....I love you x x
Rich didn't get his job but will be going to the local hospital for an application form as he really needs to get into work.
Tuesday, 18 November 2008
Karryanne has been very helpful in finding links and information about treatments and pain relief which has helped other patients.
Now it is our turn to help her and her family. We are here for you when you are ready, just say the word.
Todays blog is dedicated to Tony Todd and his family.
My illness is a death sentence - but I'm determined that I'll see out my year as mayor; GATESHEAD'S LEADER TALKS ABOUT HER TIME AHEAD
Evening Chronicle (Newcastle, England)
Monday, 17 November 2008
I arrived in Weymouth at around 2:00pm and have had the most amazing day. My friends Chris, Beck's, Jeanette and I had lunch and a look around Weymouth and were joined later by my cousin, Richard and his wife, Linda. We had an evening meal together and caught up on old times while Chris, Beck's and Jeanette got sorted out for the evening as Jeanette needed her coat. It is a little chilly here but not as bad as Leeds!
Saturday, 15 November 2008
I will pack my bag tomorrow and will be off to Weymouth....nearly wrote Germany then.....as I will be staying there for 3 days and back to work on Friday.
I chilled out in front of the TV and watched Columbo, one of my favourite TV detectives. Siobhan and Richard watched it as well as they love him!
Kieran will be back home tomorrow as he is with his dad for the weekend. Kieran rang me and told me all about his train tour he had gone on with his dad.
I am going to make a Christmas cake with Kieran, that will be when I am off on a weekend soon. I haven't made one for years and it will be good to get back into it again.
I love Christmas and my tree is very special as it is the one I bought January 2007 to use as a target to survive until Christmas and it has now become my challenge every year.
I recorded an interview and advised of my treatment and the success of it. The radio interview went out on 13th November and it was all about Mesothelioma and people who have lost their lives to it, which is fine, it is all good publicity.
There was no mention of asbestos brought into the home from the work place and contaminating other family members or any mention of other treatments like mine that are working to shrink the tumour.
The treatment is important as there may be a lot of desperate people out there who do not want to die and should have the option to have the procedure if they want it.
May be it is because it isn't available here?
Who knows. I will be emailing the reporter with my thoughts.
Interview on BBC radio.
Chris Knighton's interview.
Ian Wright's asbestos warning. Youtube.
Friday, 14 November 2008
Thursday, 13 November 2008
I went into the city centre this evening with my friends, Helen and Carolyn, to see the Christmas lights switched on and it was an experience!
We had 5 autistic children and 4 adults, a lot of anxiety,stress, frustration and hyperactivity!
We went to McDonalds for something to eat afterwards as all the children were looking forward to that. I am not a McDonalds fan but had chips and a McFlurry kept me happy. Kieran and the other children eventually settled down but us adults all agreed we would sleep well tonight!