Thursday, 30 July 2009

PCT funding.

I am adding some info about PCT funding for Chemoembolisation in Germany.

"Please look into article 49 E112 process on the Department of  Health website.

Make it real to the panel and the impact and attack at all angles but with the e112 as the central legal right

CT scans prove the clinical change and then the GP, specialist can write on the physical and mental impact.
Make it easy and as concise as much as possible and have a contents page at front with each letter numbered to correspond to the contents page so they can pull it apart and put it back togehter easily.
if then once they have put it together they then get the gp to do covering letter or specialist according to who is most supportive"

Hope this helps. Dawn has kindly drawn up this small piece to help others. we will be doing an FAQ section so any questions to add to it, please let us know.

not a good day at work

I was left on my own today with no support as all my team wnet off for a 3 hour presentation. Mine was at 5:00 so I went on my own. I was so angry with work today and feel like chucking it in. I feel I have a new lease of life and want to have it for me and not work. I can't give up work as I have 3 children to support. 2 over 18 and not working and Kieran who is 12.

Wednesday, 29 July 2009

Back to work tomorrow

I went in town with my friend, Carolyn, today. It has been raining all day and it has been quite miserable so a bit of retail therapy was in order. I got a new dress for Tina's sons wedding. Green hat and black dress are the colours this time.
Kieran is with his dad this evening as I am back to work for 3 days. 
The kittens need to go for their yearly boosters which will have to wait until Monday now. 
I am doing my mistletoe tonight. 
Rich still hasn't got a job. Not sure how he is going to get to Japan if he can't save up for the trip.
He wants to go to Japan for a year but I have told him he needs to get a job and learn how to save up and support himself.
Siobhan is doing well. She is doing another year at college. She will be doing her bachelors..... I am so very proud of her. 

Tuesday, 28 July 2009

Swimming today.

Kieran went swimming with his friend today. It is so good to see him socialising as he finds it hard at times. The boys had to come out of the pool earlier than they thought as some phantom had done a poo in it. I have never seen a pool empty so quickly! They got another ticket to go back for a free session as the pool had to be cleaned. They still had a great time and it was good to see Kieran socialise  with another child.
Not sure what is happening tomorrow as I am back to work on Thursday for 3 days. I may go in to the city centre as my friend Tina's son gets married next week and I have little time to sort out for that.
I have sent off all the paper work concerning the house we are buying. I am hoping the survey will be better than the last one as it was disappointing.

Busy 3 days

Kieran and i went out to Pennywell farm yesterday with his friend as his birthday was on 14th July but he wanted to celebrate with Kieran. We had a lovely time with Kieran's friends family.
We have been invited to go swimming today. I am having my hair cut this morning and swimming will have to be this afternoon. This has cut down the time I have for sorting out paper work and everything else that needs doing for moving.
It is going to be a tough call as we have been asked to move within 28 days by the sellers of our house. I am back to work on Thursday and as it is a 10 hour day it limits my time. I am sure we will manage it will just be a little stressful than having more time.

I have had a message sent to me informing me about the PCT funding for Mesothelioma treatments in Germany. This is great..... it is even better knowing that an oncologist in Barts hospital is supporting patients going and suggesting they ask for PCT funding.
Well done Dawn and Liz who have worked very hard and thanks to Bob, Cher and Chris who have written statements supporting the treatment.

Saturday, 25 July 2009

Well done Ron!!!

Congratulations to Ron who has won PCT funding for his Mesothelioma treatment in Germany. He has had 3 treatments which has shrunk it 50%.  I will be adding an FAQ for support with getting PCT funding.

My house

More great news, I got the house I looked at after the one we were going to have was revealed to be an expensive investment as I would have a lot to do on it. The most major fact was that pre- 1980 all artex had asbestos in it and every ceiling in the house had artex apart from the kitchen that had polystyrene on the ceiling which is a fire hazard.
We have been told that there is a condition attached to the new house. We have to exchange contracts and move in within 28 days..... Wow!!!!

My official 50th.

Gina and I missed the cancer research do as they had all gone home so we went to the pub!
My 3 gorgeous children. Siobhan created a book of photos for my birthday, it is beautiful. I couldn't stop blubbering as I was opening it. It is so special.
                                        Couldn't get a cake big enough for 50 candles!!!
                             My friends, Tina and Carolyn celebrated with me at lunch.
                     I had lunch with Julie the day before, they are wonderful friends to have.
                                    The legend that is my T-shirt!!!       Thanks Ali B.

I had an amazing day yesterday. I wore my T-shirt that Ali made me. It is a very blatant message to Theo. I went to lunch with my friends, Carolyn and Tina and then out in the evening with my wonderful children and the late evening i went out with Gina to a cancer research fund raiser. When we got there everyone had gone home so we decided to go to the pub.
Kieran stayed with his dad last night as I went back to work today.

Thursday, 23 July 2009

Last day of the 40's

I am enjoying my last day of my 40's. Tomorrow I will be 50!!
The picture above is from last year and tomorrow I will be celebrating with the children again.
This birthday has been a target date since I was diagnosed. It has been one of my biggest challenges and it looks like I have made it.
I am so pleased to be here with my family and hope that my success spurs others on to see that this treatment can work where everything else seems to fail.
The downing street website hasn't responded with a answer about trialing chemoembolisation here for Mesothelioma. It finished on 6th July and I thought there would have been an answer by now.

Wednesday, 22 July 2009

He's home!!!

My little bean is home!!! I met him from his train this evening and we were both glazed over. I was wonderful to see him after more than 2 weeks. Kieran didn't stop talking about all his adventures in Florida. We are having breakfast with my friend, Julie, and her son tomorrow which will be lovely. Friday is going to, hopefully, be wonderful as well.

Kieran comes home today

I am looking forward to seeing kieran this evening. He has been to Florida with his dad and is returning home today. It has been 2 weeks since he had gone and I have missed him. It has been lovely having the freedom to do what I want to do. I will be glad when he is home.
We will be looking forward to my official birthday on 24th July. I am going to be celebrating all day as it is a day I didn't think I would see and it is now 2 days away.

Well done to Tom Daley for becoming the first world champion diver for Britain.
He gave me a signed picture as my friend Tina is good friends with his family.

Monday, 20 July 2009

Tired today

I think the weekend has caught up on me as I am feeling so tired today. It has been wonderful and has been worth every ounce of tiredness I feel.
Yesterday was wet, I asked Siobhan if she wanted to go for a drive. She said yes and we headed off for Dartmoor. We went into Princeton were we had a lovely meal in a cafe called the old police station. As we are both veggies, it was great to have a veggie roast.
We then went into Tavistock for a wander by the stream to see the ducks. We got chatting and for the first time she talked about my illness. It wasn't much but she said she wanted me to see her pass her degree. Well, she did it with distinction and that must have been so difficult for her as it sounds like she was worried i wouldn't see it. She is doing another year at college and is doing her BA. It was so lovely to get back to the relationship we had before the diagnosis. She is a wonderful girl and I am so proud of her.
Kieran is back on Wednesday, He has been to Disneyworld with his dad.  It feels like he has been away for months. 

Sunday, 19 July 2009

Cancer research relay for life.

                          My dad's candle bag and Gina and I (below) with our survivors T shirts on.

Mary and Andrew's wedding and then the relay for life.

It has been a very busy day today. We stayed over night in the hotel after my party and got back home as I had to change into my wedding gear for Mary and Andrew's wedding today. I also wanted to do the relay for life with Gina. 12pm was the survivors victory lap to start the day and then it was off to the registry office for 1pm.
I met my friend, Tina, there and we thought Mary looked lovely.
Tina stayed until around 3pm as she was still tired from my party. I stayed to see the first dance and left around 8:30pm to rush over to the Brickfields track again to carry on the relay. Gina had very kindly made me a candle bag which had my dad's picture on it. she made one with her mum's on and we both had a hug and a cry as we miss them both so much. Gina said a small poem which she did very well considering she didn't feel she could do it.
I got home around 10:30pm. What a wonderful couple of days!!!

Mary and Andrew's wedding.

                                               Mary looked wonderful and enjoyed her day.
                                                                  Andrew and Mary.

What a great evening.

I had a fabulous time on Friday at my pre-birthday party. I suppose it could be called an un-birthday as the official on is on 24th July. 
I had friends who had traveled to be at the venue. 
David and his wife travelled to Plymouth and stayed overnight. 
My cousin Richard, his wife Linda and my neice Sian and her boyfriend travelled fro Portsmouth.
It was wonderful.
The entertainment was brilliant. We had a local act, Harry Lea, who performed trbutes of the blues brothers, Queen and Austin Powers.
He was very professional and very entertaining.
I also had a guy called Nick the fish who I had seen in the barbican jazz club. everyone seemed to enjoy themselves.
The cake was stunning. Amanda's icing on the cake can be found by doing a google search. She made a top tier cake and small cup cakes underneath. It was a lot better than having a large cake and all the mess of cutting it.
More pictures are below.
Everyone who mattered to me was there. It was such a brilliant evening and was thoroughly enjoyed by everyone. Ali, my friend, had made a T-shirt for me. I must put a picture on here. On the front it said "Mesothelioma can kiss my arse" and on the back it said "I'm still here".
I will hopefully be wearing it to work on 25th with pride.

My 50th Birthday Party

                               My baby boy, Rich, being a blues brother and looking real cool !!
                                                                Gina and I
                                               My good friend and Karaoke mate, Ali.

                                                                            My lovely cup cakes.
                          My beautiful Birthday cake. It was made by Amanda, she did a great job.
                                      My friends, Tina, Julie and I. Many more friends turned up. 

Thursday, 16 July 2009

Busy day today.

I have had a lovely morning with my friend, Caroline. she was very helpful yesterday helping with the favours. We went into town and saw some beautiful hats in M&S and I found one that actually fitted me. Caroline made me buy it....honest   : ) 
It is a lovely jade green with a black band. I am going to keep this one for Tina's sons wedding in August. I will now have to find a frock to match it...oh it is such a shame: )
I am so excited about tomorrow. I have got my nails done courtesy of my lovely neighbour, Katherine. She will hopefully come along tomorrow. I have got the cake, favours, photographers and balloons sorted. Just have to pay entertainers tomorrow. Woo hoo....who thought being 50 could be so much fun !!!

Wednesday, 15 July 2009

Happy Birthday Richard

Happy birthday to my first born son who is 20 today!!!
Richard had a bit of a bad start to life, He was born unable to swallow ( TOF) .
He doesn't have any issues now but it was a nightmare when he was very young. He still has to get a job as he wants to go to Japan for a year to teach Japanese families English.
Have a wonderful day Richard and you can celebrate at my party on Friday.
Siobhan is off to the 02 today to see Nine inch nails. I am sure she will have a great time.

I am meeting a friend for breakfast this morning. I got the favours done for my party with a little help from my friends, I made them a ploughmans lunch as a thankyou.

I am so excited about Friday, Saturday I have a wedding to go to and will be trying to squeeze in a survivors walk before hand at the Brickfields track.
Hopefully it will all work out. Tina, my friend, is coming to the wedding with me.

Monday, 13 July 2009

Pictures from the weekend.

A wonderful weekend.

I thoroughly enjoyed my weekend. I went to my friend, Mary's hen night on Saturday night. She is getting married next week and I will be going to her wedding. It is the day after my party so hopefully, I will be well enough to go. I don't intend to get drink too much. Yesterday I went into Plymouth city centre with Tina. We had a lovely time. It was great, we had lunch and enjoyed having a spend out. Tina won!!! I bought myself a new wig.. I couldn't resist it. I am so excited about Friday. It will be good to see people who I haven't seen for a long time and catch up and also to celebrate the fact that I have done something that Dr's in the UK said wasn't possible. I was told I would have 6-9 months to live in November 2006 and 1-2 years in February 2007. I was worried I wouldn't reach 50, Well DR's look at me now!!!!

Friday, 10 July 2009

Brilliant day today!!

I drove to Paignton which is about an hour away from Plymouth, to meet Sam. Sam has just been diagnosed with Mesothelioma. He was on holiday with his wife and son and looked really well.
They are a wonderful family and don't deserve to have Mesothelioma imploding on them.
I was very impressed with myself, I got to Paignton and then got completely lost and had to call poor Sam a couple of times to guide me!!
The reason I was impressed is because I drive around town and don't do many long journeys. My little car, Halo and I managed to have a smooth drive and a lovely day. 
When I got back, I picked Siobhan up from college and then went out to meet Jean. Jean has liver cancer, she also has it in the lung. I have told her chemoembolisation is available in the UK for liver cancer.
I then went out with Siobhan for a curry and it was lovely, just like a mum and daughter should be. We have discussed doing the race for life next year which will be wonderful if she does it with me.

Thursday, 9 July 2009

Meeting Julie and family

                                      Front:  Susan and David, Back: Myself and Julie
I met David and Susan with their daughter, Julie in Plymouth today. they travelled from Cheshire to meet up and ask questions about the Prof and the treatment. They were lovely people and David , Keep that hat on , you look good in it!! David has Mesothelioma and wanted to see how well i looked after having it and had a lot of questions to ask.
They stayed for about 30-45 minutes before setting off home. 

I am meeting Jean, a lady with Liver cancer tomorrow as we didn't get to meet today. She lives in Cornwall but works in Plymouth so it is a little easier.
As Chemoembolisation for liver cancer is available in the UK, I don't know why people are having to travel to Germany for it.
Today  has been good. Kieran is enjoying himself and sent an E-card of him and his dad in a space ship.
I bought Siobhan a card, some choccies, a balloon and a chocolate medal for doing so well. She is wonderful.
It's Richard's birthday next week, he will be 20. Hopefully we will be going out for a meal to celebrate.

Well done to my lovely daughter, Siobhan , who passed her illustration and print degree with distinction.
I am so proud of her. She has done such a good hob with this website and keeps on top of the technical stuff. She is a very clever girl.
I am meeting 2 people affected by cancer today. they want more information about chemoembolisation. One has Mesothelioma and the other has liver cancer.
I really hope they have success with it. 
I have so much to catch up on, I do not have to go to work until I am 50!!! I am off until 25th July. I have my party next week and, like the queen, as it was pointed out to me by one friend, I have 2 birthdays. My real birthday is 24th, I am going to celebrate with my babies. 
I am so excited about my party, It will be an opportunity to thanks all the special people in my life for their support through the horrendous time I had and for being with me through the treatment. Thanks to all of you, especially Pat and Tony, without them I don't know where I  would be here now.

Wednesday, 8 July 2009

So busy!!!

I have neglected the blog for a few days, I have been working my usual 3 10 hour days and then 3 days off catch up. Kieran arrived saftley in Florida, he is there with his dad and I am sure he will have a wonderful time. His dad didn't call to say they had got there and all was ok. I was out of my mind with worry on Tueday and ended up calling the hotel they are staying in to make sure all was ok. His dad's mobile wasn't working and he didn't want to pay the $30 for the phone call. I put him right on that one and said he should have reversed the charges as I wanted to know all was ok.
This is my last day of rotation and I am then off until 25th July. I am so excited about my birthday party. Just got to find a photographer to take some pics as I want an album of the event as a keep sake for the children.
I am behind with all my pictures so will sort it all out when I am off. 
I am meeting 2 people tomorrow to discuss the treatment and going to visit another on Friday. 
2 have Mesothelioma and one has liver cancer.
Must go as I have to sort my self for work.

Saturday, 4 July 2009

Kieran's sports day

Kieran had his sports day yesterday and it was lovely. The weather was beautiful. all the children did well.
Tomorrow he is off to Florida with his dad so today I took him to Gunnislake in Cornwall. We went on a train. He loved this as he enjoys going to the station and today it was even more special because we didn't just look at the trains, we had a trip on one. We got a taxi into Callington and had a drink and a doughnut and came back to Plymouth.
I am going to miss him so much while he is away.
I hope Kieran has a wonderful time with his dad. He will probably come back with a lot of Jonas brothers memorabilia as he likes listening to them.
I am back to work on Monday till Wednesday and then i am off for 2 rotations....woo hoo!!
It will be party time, My party is on 17th July and I am really looking forward to celebrating with some very special people who have helped me through my worst moment to date.

Wednesday, 1 July 2009

Ian Woods 1983 - 2009

It is with great sadness that I heard Ian Woods in South Africa had passed away today.
He has fought his Meso battle for a long time and as a last resort, went to Germany for treatment.
He was very poorly and fought to live with his lovely lady, Kathleen, by his side.
In the end it was too much and he passed away early this morning.
Ian was 26 years old for gods sake and was far too young to be taken.
This is what makes me so angry. If governments and insurers took responsibility for their actions, people would not have to suffer like Ian and many others have.
It was an absolute pleasure to meet such a brave and inspirational person when I was in Germany in June. Kathleen is a wonderful spirit and never left him through his toughest times.

I am sure I can say that on behalf of Mesothelioma and me, Condolences are sent to Ian's family at this very distressing time and also to Kathleen who has been a tireless support for Ian and his family. She is one very special lady.
Today's blog is dedicated to Ian, Kathleen and their families.