Tuesday, 30 June 2009

Handset faults today

This is my first day on Handset faults today and I am tired and ready to walk out. I am going to persivere with it as I am not one to be beaten.
I think I am feeling down as well as Kieran is going to Florida on Sunday and will be away for 2 weeks.

He will miss my birthday party but will be home for my birthday as that is the week after and it will be great to have all the children around. I am going to take them out to eat to celebrate.

I have another 2 days to work and then 3 days off.

Tomorrow is another day and I am sure it won't feel so bad .

Monday, 29 June 2009

Great day today

Yesterday I felt unwell. Not sure if it is because I have started my monthly's again and the mistletoe doesn't like it or if it was one of those tired down days but I felt poorly.
Today I felt a lot better. I went into town with Siobhan and spent a fortune on my outfits for parties and weddings coming up. I have found my dress for my birthday party, i have to find some shoes to go with it now!!!
Siobhan got a lovely little top for my party. I saw it and loved it, We both have very similar tastes.
I also bought some T-shirts for the boys.
Kieran will be off to Florida with his dad on Sunday, I am not looking forward to that. I am going to take him on a train tour on Saturday and spend as much time with him as possible.

There is some good news about Mistletoe treatments. Apparently there are 5 different centres that can prescribe it on the NHS!
I am waiting for all the info and I will add it on the blog as soon as i get it..

I am back to work tomorrow, in training for handset faults.

Saturday, 27 June 2009

Summer shows and punk gigs.

First of all I am going to say RIP Michael Jackson,  I didn't want to include it on 25th-26th as Farrah Fawcett had died the same day. 

The above picture is Tina, my friend and I with the drummer from a clash tribute band called "London Calling".
We went to a place in Plymouth called the Hippo.  We had a brilliant night. Tina looked really cool in her punk gear.  We were just about to leave when "Jilted John" came over the speaker. We went back in and bounced around to Jilted John. I am looking forward to going again.

2 of the band members from "London Calling".
                                             Tina and I at the gig last night.

                                             Siobhan's summer show
Siobhan has finished another year at college. she had her summer show at her clollege and it was exquisite. She is very professional about her work and it shows.
I was very impressed with the work at the colleg. All the students had surpassed themselves.
I was and am very proud of her.

                                       Siobhan, myself and Richard at the summer show.
                                   Siobhan's little sparrow she painted, I have named him Chip.
                                                          My lovely daughter and I.

Thursday, 25 June 2009

Farrah Fawcett.


I have just heard that Farrah Fawcett has passed away. She went to Germany in a last desperate attempt to save her life but it wasn't to be.

Thoughts and prayers are sent to her family from all at Meso and me.

Rest in piece, no more pain x x x

Happy birthday Maria.

I am having Cheerio's for breakfast this morning in memory of Maria Douglas who passed away not long ago from a cancer related illness. Maria was a true inspiration, she was always happy when I spoke to her. I met her on Facebook and she became a special friend. She helped a lot of people by campaigning for a cancer drug that could have given her today but unfortunately, it came too late. She opened a gate for may people and will be sadly missed. My thoughts are with her sister Julie and all of her family today, especially her children.

Maria would always start the day with her Cheerio's, it would always be on her status. She would have them and then get her little boy ready for school. She died far to young, she was 40 years old. 



Maria Douglas ( pictured)


Happy Birthday beautiful lady, thinking of you and your family today and always x x x x x x

Tuesday, 23 June 2009

John Coles.

Todays Blog is dedicated to John Coles. 
I have been in touch with John for a long time, before I started the German treatment.
He had a very positive attitude and was always updating me about how he felt.

John passed away on 22nd June. 
Like all the other wonderful people who get this disease, He will be on the shoulders of all who are fighting this and will go forward with us as we try and change the way Mesothelioma patients are treated and hopefully get the German treatment trailed in the UK so no one has to worry about traveling and he will inspire people with hope.
John was an inspiration and I am sure that all who log onto Meso and me will join me in sending our heart felt condolences to John and his family.

A new star will be shining in the night sky.



Monday, 22 June 2009

New home ??

                                                         Me with Jacqui, Wendy and Lyn.

I did my first training day at work today. I got home in time to meet Kieran from his bus. We then went out to see some houses. The first one was in a lovely area but as there are tenants in the house, they don't worry about smells and being tidy. The second was a quaint little house. It was lovely, all 1930s original fire places. I liked it but we couldn't have lived there and decorated as it needed to be done with no one living in it. 
The third one was Beautiful. We all liked it. It is just a matter of making an offer and seeing if it is accepted. 
We came back and the children had takeaway pizza for tea as a treat as I was going out withmy  friends.

I had a lovely evening with my friends. I have known them for more than 20 years and we still try and make time to meet even though it maybe months apart due to family commitments.
Another day of training tomorrow. I am missing my 2 days off though !!

Sunday, 21 June 2009

Beautiful day today


It has been a very relaxing day today. Siobhan, Kieran and I went to the cemetery this morning to lay some flowers down for my lovely dad as we all miss him. I laid some flowers at my cousins plaque as well as he has a daughter but she is London. 
I then took Kieran out to Orange call centre as his dad works there as well. He took him out a fathers day gift and card. I didn't tell him Kieran would be coming out so I hope he had a pleasant surprise.
The sun has been shining all day, Kieran is a little tired as I am not sure what time he goes to bed at his dads so at present, we are having a discussion about bed time and he feels that 9 o'clock is too early. I have had to remind him that I am the parent. Hopefully soon he will calm down and listen to me. Bed time is 9 o'clock on a school night Kieran!!!

Visit to the cemetery

The flowers that we laid for my dad and the children's granddad to remember him this fathers day.
                              A rose that is on my dad's rose tree in the memorial garden. 
The memorial garden is beautiful. It was a very sunny day and it was so peaceful. Siobhan and I would like to have stayed longer but Kieran was getting bored.

Fathers day.

I am going to the cemetery today to lay some flowers for my wonderful dad. I still miss him so much and wish he was here to see the progress that has taken place over the last year. I have written a little letter to him and know he is on my shoulder where ever I go. I feel he has been with me all through this process as it has been so easy. I hope it continues for a long time.

To my dad,

You were fun loving and wonderful. When I think of you I think of Charlie Chaplin, Buster Keaton, Laurel and Hardy and all those other brilliant silent film characters you loved so much..
I can hear your laughter while I have these images in my head.
Tom and Jerry, Looney tunes..... The list goes on.
You were a great person who was taken from us far too soon. Alway young at heart and a joy to be with.
Dad, I love you and miss you, remembering you today and forever.....

Debbie x x x




Saturday, 20 June 2009

A letter from my oncologist.

My oncologist sent me a wonderful letter yesterday. I was worried that he may not take me back on his books as I have been outside the UK for treatment.
He starts the letter by saying he was pleased to hear my news and the treatment was beyond my expectations.

 To quote "I am really happy for you and because of your fighting spirit I am not surprised".

I am so pleased with that, hopefully together we can get a few more on board.
I am getting a lot of emails about the treatment and am sending out the information to many who have just been diagnosed.
It is such a great feeling to know I am helping people. I still have a twang of sadness for those that don't make it. Like all treatments, there is a risk whether it is large or small but when there is little else on offer, people feel they have a small chance of life.
I have finished my shift on pay as you go today and will start training for Handset faults.....ooops I mean support on Monday so only one day off this week.
The children and I have some houses to look at on Monday and I am meeting up with some of my oldest friends to celebrate my results and my friends wedding.

Missing my dad.

I have had a tough day at work  today. there has been a call queue which means that we don't have a lot of time between calls, it is one after the other and it does not give anyone time enough to compose themselves for the next call so if it is a bad one, My voice tone is going to be slightly off. 
This is a shame because the majority of customers are wonderful. like all jobs, you get the odd few that let it down.
I have been thinking a lot about my lovely dad who passed away in August 2006. I miss him so much and with fathers day approaching, I feel very emotional about it.
 
Dad I have a message for you,

It has never been your fault that I had this illness.

I wish I could have saved you, but please know that as I was not able to do that, I am hopefully  helping to save other dad's.
I wish you were here and I miss you.
I love you so much....... Your loving daughter... Debbie x x x x

Thursday, 18 June 2009

Well done Kelly!


Well done to Kelly who shaved her hair off for cancer research yesterday. she works at the Orange call centre and has raised nearly £500. I went in to support her yesterday and she did well.

I went back to work today and was told that my hours for next week would be altered to accommodate my boys. I will be starting at 9:30am now and not 8:00am and still finishing at 3pm. I am not sure what to do, I don't want to cut my nose off to spite my face as I want to see Siobhan's summer show at college next week so I think I will accept those hours otherwise I will have to ask for time off.
I have had a few more emails and queries about the treatment, a couple were to do with different Cancers. I am not sure if the Prof can help but he may be able to point them in the right direction. 

Wednesday, 17 June 2009

Another good day.

I had my hair cut this morning as I am trying to grow it to all one length. It is an absolute mess at the moment, but Jacqui, my friend for nearly 20 years, always does what I want. I have been so tempted to shave it off again but have resisted the temptation as this is my new years resolution.

I had a call from the agency dealing with Kieran's direct payments and was told i don't have to make a contribution as he is a child. I was quite confused about it all yesterday. I found a wonderful website that puts it all in lay mans terms. The lady is called Sue, she is blind and maintains the site. It is very informative.

http://www.suesdirectpayments.org.uk/

I went to look at a house todday with Siobhan, we are trying to find something that will suit all of us. I know I will have a little work to do as we don't have funds to get anything spectacular.

I am going into work this evening to support Kelly who is shaving her hair off for Cancer research. I did it when I first found out I had alopecia. I dyed my hair bright red and shaved it off. One of the many things I have done. I raised some money for Children in need. It was about November 2005. That was when i started to wear bandanas and wigs.
The Alopecia is all but gone now. Just a couple of small patches at the side. 

Kieran will be staying with his dad this evening as I am back to work tomorrow. 
Not sure what is happening about next week as I have had problems with the boys. Kieran has behavoural problems due to his autism and Richard just loves to push his buttons. I will have to leave them from 7:30am till 9:45am for 5 days next week and the week after. It isn't going to happen so I am going to have to talk to my boss about it. 
If I leave them alonbe, they would run riot and i would stress.

I had a form from those lovely people at the tax credit office today. I have told them I don't want the payments as every year, according to them, I owe them money. I have decided to not accept it as I don't want the stress, so what do they do, send me a form to make sure that last years final payment was correct. The form is going in the bin. they argued with me last year about the payments, gave me £2,500 and took back £1,600. I did query it but they insisted they were right so why do I need to go through it all again. I don't want it....leave me alone !!!!





Eventful day yesterday.

Just a quick reminder that the petition to get the Chemoembolisation treatment here finishes on 6th July. There are 1,400 signatures so far which is great.
Pleaseremember to look in your junk mail box as the respond mail can sometimes go in there. Make sure the petition has been signed by going back into it. Smoe people have had to do it twice.

http://petitions.number10.gov.uk/Mesothelioma-/


Yesterday was a busy day. Firstly, there was a hotographer who came around to take some pictures, He asked me if I could change my clothes as some news papers don't like pictures of people in jeans!!! I said I have black trousers, No, he said that isn't any good either!!
I was shocked at that, this wasn't a fashion parade. I told him that I only had black trousers and that what I was wearing would have to do. I also told him that if they didn't like the pictires, they wouldn't get the story and stayed in my crop jeans and blue T-shirt.
I then spoke to the journalist and am hoping that if itdoes hit the nationals, she ges the deatils right.

I then went out to the place where I am having my 50th Party to confirm details and give in the buffet menu. Istarted telling the guy I wanted complimentary drinks and he knew it was for my 50th and advised me that people don't usually do that as not many people turn up. I was about to explain my reasons why and he said " are you that lady I saw on tv last night"?I confirmed I was and he told me about his friend who wasn't well at all. She is on oxygen and it may be too late for her. She has Mesothelioma and that is why he remembered me. He then understood why I wanted the complimentary drinks and was absolutely lovely.

After that went to meet up with a lady who is going to look after Kieran for me. Social Services have agreed to pay her for 6 hours a month...... after 6 years of asking for it that is!
I found out that I will have to pay part of the contribution, I didn't know about that, nothing had been mentioned. I don't mind doing it but I did think that as they have never helped with any respite with Kieran, at leats I would get that. I am still going ahead, it will be good for Kieran and good for us as a family.

I have spoken to quite a few people about the treatment. Some have Meso, some don't. I have given them the info about the Prof. Hopefully they will get results.

Today I am house huntin again. I still like the little house we saw on Monday as the view was beautiful and it was so peaceful.

Monday, 15 June 2009

The house is sold!!!


My dear little house is sold.... and I know the people who are buying her love her as much as I have. They have come back 3 times with offers which is great.
I hope they have as much happiness as I have in this little house. 
Now I have to look for one, we went to see one this evening and it had the most beautiful view.
We are going to look at a couple of others and see what we think.

Apologies.

My daughter Siobhan has asked me to apologised to all those people who have sent in pieces to be added to the remembrance wall. She has been very busy with her college work and has a bit of a back log. It will be done as soon as possible. Sorry for any inconvenience.

On a lighter note, I am going to add a link the the site called "name that tumour". I have asked many people who have lost their loved one or have cancer and they said they were not offended by it. My way of dealing with my cancer has been to accept it and to do this, I named it. He is called Theo and every time he shrinks I like to think that he is moving his belongings out.

I am also adding the like for the BBC spotlight local news that I was featured on today.

http://news.bbc.co.uk/1/hi/england/devon/8101707.stm

I didn't have time to do my hair this morning so it is a real mess...... I am happy it is back though !!

Great day today

I have had a busy morning...I had 2 radio interviews and BBC spotlight came around to film. It was good to see Sally again as she has been on my journey since the beginning. Kieran stayed off school this morning so he could be filmed as well.
I am hoping this will be pushed out a little further as this treatment has shown to work, not just for me but for others as well.
The feature will be on BBC spotlight this evening at 6:30pm.

I may have sold my house!!!
I am going to look around now and hope we find something within our price range.
It is so exciting.... I am off for 3 days now and go back to work on Thursday.

Saturday, 13 June 2009

Back to work today

Kieran's fun run at the donkey sanctuary went well yesterday. It was such a shame it rained but the children enjoyed it. 

I went back to work today and heard that i will be going on a different call queue. I have to have training for 2 weeks and this means I have to arrange with Rich to put Kieran on his bus in the mornings.

I only have 2 days to work this week as I had yesterday off to see Kieran run and I had a party in the evening. I went with my friend, Tina.

I heard that Steph Chouette has brain and lung cancer now. She is still fighting it and i will be with her all the way.
Ironically, her liver mets are coming back normal so the German treatment helped her there.
I am doing my mistletoe tonight which is going really well.



I only have 2 days to do this week as Kieran had his sponsored walk at school. He did very well and was proud of his medal. His dad and I were very proud of him.

Friday, 12 June 2009

For Marcia.

It is with sadness I heard that Marcia had passed away on 3rd May.
Marcia had Mesothelioma, Her friend, Helen, had been a great support to her and will miss her terribly.It is always hard when someone passes away and I am here congratulating myself about my results.

Todays blog is dedicated to Marcia who will be on the shoulders of all who fight this disease.

Condolences to Marcia's family and especially Helen who has been her constant companian and a true friend.

Thursday, 11 June 2009

This is amazing!!

The CT images here show just how much change there has been in my tumour.
the first one is of my left lung when I had my first treatment of Chemoembolisation.


The second shows the scan results from Monday 8th June and I think you will agree, it is a marked difference.


I was shocked when I saw the results from last May as I forgot just how bad it was.

When Jeanette and I saw the images from the scan in March our jaws hit the floor. Itwas remarkable, a true miracle.
Dr Steele has been in touch. Hopefully there will be some movement in getting this treatment acknowledged.
I only have one thing to say, Thank you Professor Vogl for giving e the most precious thing in the world. You have given me time and there is nothing I can do or say that would ever equate to what you have donefor me.
A BIG FAT THANK YOU FROM ME X X




Wednesday, 10 June 2009

Back to the norm...and it's wonderful!!

I am looking out of a window and seeing the sun shining, emulating how I am feeling about life right now.
I am also wishing Ian well as he will be returning to South Africa soon. There are so many people who are trying this treatment and it is working.
I do feel a pang of saddness when I think of those who didn't get to experience it, they are always in my thought. Nicky is one of those. She had one treatment but didn't pull through, the same as Ken. They were both wonderful people and deserved to get some hope. 

Happy Birthday to my lovely cousin, Robert who died 6 years ago and is never forgotten. I will pop to the cemetery today to remember him. While I am there, I will remember my dad and put some flowers there for him.
I am sure they will be in heavens bar. If they are then I want them to know I am still missing them both.

Kieran has a sponsored walk on Friday which will be wonderful and I have a party in the evening which worked out quite well as I am due to work and have got the day off.


Tuesday, 9 June 2009

This ones for Erna....Never forgotten x

Jeanette is pictured with a cocktail. I met Erna last year when I had my first treatment in Germany. She had her treatment the same day and was in a bed beside me. We hit it off right away and decided that we weren't in a hospital ward, we were on a tropical beach. We had a cup of water each with a very fetching picture of the inner workings of the human body....nice. This had to be changed as well and it became a cocktail, sex on the beach.
Erna passed away and this was hard as I really wanted to meet up with her again.
The Irish bar in Frankfurt were Jeanette and I hang out. Such a lovely place. The manager of the bar gave us the sex on the beach cocktails as complimentary drinks as we were celebrating my news.

Jeanette and I celebrating my 83% shrinkage with my tumour and toasting Erna. We had our German beer as always.
Ian, Kathleen and russell have travelled from South Africa for Ian to have the chemoembolisation treatment. He has Mesothelioma and is very poorly. They are a wonderful family and I really hope this works for Ian. Kathleen is very devoted to him.
Me with Ian and Kathleen. I also met Ben, Matthew and Janet in the hotel. Janet has Mesothelioma and has come over for chemoembolisation treatment. She is the same age as me and emulates the horrors and anxiety I had last year. I would love to hear that Janet and Ian have a great success with the treatment. That would be so rewarding.

Another great result!!

Theo is loving every minute in Germany ! Another 10% has gone that makes 83% in total and the Prof is baffled as to why.

Jeanette arrived at around 1:15am yesterday to pick me up as her partner , Mark, was going to drive us to Birmingham to get our flight. I put my alarm on for 1:00am and had a text not long after saying they were on their way. I thought Jeanette said be ready by 2:00am....ooooeeerrr.
I rushed to have a quick wash and pack my bags, leaving my laptop and makeup behind. I looked a sight and was so tired.
We made our way to Birmingham and got our flight, Jeanette lost her phone, what a start to the day.
We got to the hotel and I had a shower and cleaned myself up ready to  have my MRT and CT scans done.
We got to the secretary's office and this vision in white was walking down the corridor...it was the Professor...so apt he was wearing white as he is my angel. 
He greeted me like a long lost friend and this changed the day. Jeanette and I both felt lifted by it. I went off and got the scans done and then waited in the waiting room to see the Prof.
Jeanette filmed the consultation after we asked the Prof if it was ok to do so as BBC news in Plymouth wanted some footage.
The Prof asked me if I had had any treatment in the UK. I told him no and watched as he scanned the CT/MRT images on the screen in front of him. It was amazing. I have 2 very healthy looking lungs. I asked him if he could put the images from last year on the screen which he did and I was shocked. I had forgotten how bad it was. The Prof said he "didn't knoiw where all these bits had gone" meaning the tumour that surrounded the outside of the lung.
I asked how much more had gone and he said 10%.
It was wonderful.... 17% left ..... What a year it has been.
Thank you Professor Vogl ... you are one amazing person !

Sunday, 7 June 2009

Big day tomorrow

I have had quite a good day today, I have been feeling a little delicate, a lot of that is due to the CT and MRI tomorrow. I get so angry with my self as I know that I have had a brilliant result but I still have pangs of worry that Theo has decided to return. I don't think he has because I feel so well and the main bulk of the tumour was at the base of the left lung and has always been a little tight but now feels a lot looser. 
I am looking forward to seeing Ian and Kathleen from South Africa and maybe some other people.
My friend Jeanette and I will be heading off to Birmingham at 2:00am, Jeanette's partner is driving us there and bringing us back. What would I do without them !!
I hope we don't have a delay on the flight as the appointment is at 11:30am German time and our flight leaves around 7:30am GMT.
I am also looking forward to seeing the Professor tomorrow, he has been my savior and has given me the most precious thing in the world, more time with my children and the people who care about me.
There is nothing I can do to repay him apart from making sure this treatment is considered for Mesothelioma in the UK.
I will add the results here tomorrow. 


Saturday, 6 June 2009

Back to work today

I am getting ready to go to Germany on Monday, first I have to get 2 days work out of the way.
All has been good at home and Theo hasn't bothered me for such a long time. It is wonderful to feel so well and get about so much better than I did before.
I had an article emailed to me which was about Farrah Fawcett and the documentary made by NBC about her fight to live.
It showed Professor Vogl and a lot of press have painted him in such a bad light so it was refreshing to see this link.
I am looking forward to Germany this time, not just seeing the Professor again but meeting some wonderfully courageous people who are fighting to live just like I am and I am hoping they get the success I have.



http://www.theklinikmovie.com/Klinik/Bretts_Blog/Entries/2009/5/17_Farrahs_real_story.html

Kieran has gone to stay with his dad until I come back from Germany. Richard is out this evening so it is just Siobhan and I.  

Tomorrow I am working,but tonight I have my mistletoe. It is all good today even if the sun stopped shining.










Thursday, 4 June 2009

Lovely day with the children.


It's voting day today and I am so proud of my children. Both of them had decided they wanted to vote. We all walked down to the polling station and placed our crosses on the enormous voting slip. Kieran helped me with mine as he was interested in what the voting was for and what happens in the secret boxes.
We went into the city centre afterwards to buy the Britains got talent game as that is his latest obsession.
He is wearing his Jonas Brothers T-shirt. I was going to take him to see their film but it isn't in Plymouth.
We took the kittens to the vets yesterday to get them registered. Poor Storkie was so frightened. We are little concerned about him as he is so clumsy. The vet checked him over and all seems ok. He said that he should get better as he gets older.
Kieran is back at school tomorrow, I am meeting a friend for breakfast and still have to find a new boiler.
The viewers on the house put in an offer. £15,000 less again. I have refused it again as it is too much to take off the price. I am happy to wait for as long as it takes. If we don't sell it, I am not too worried.


Wednesday, 3 June 2009

Good morning

It is another beautiful sunny day today.  Kieran has his school review this morning. His back is still hurting him but is getting better slowly. I have 2 more working days to go and will then be off to Germany to see my lovely Professor. Sally from the BBC has asked if I can film my consultation which the Professor has agreed to.
Once again, my lovely friend, Jeanette, will be coming with me and will have the job of Camera girl. We are leaving from Birmingham this time as the flights from Bristol have been cancelled at the moment. Her partner is driving us to Birmingham and will be bringing us home.
Cher from Australia won't be there as she has a blood clot and cannot travel. Ian and Kathleen from South Africa will be and I am looking forward to meeting them.

Monday, 1 June 2009

Well done Jon.

It's the 1st June and last year I added a news feed that Jon Matthews had won his bet that he had placed the year before. Jon has Mesothelioma and was told that no one lives past 25 months with Mesothelioma by his Dr. Jon decided to place a bet that he would still be around a year after that and won £5000. Well, he has done it again, he placed another bet last year and will be picking that up today. Well done Jon !!!


http://news.sky.com/skynews/Home/UK-News/Cancer-Sufferer-Jon-Matthews-Set-To-Win-Bet-With-Bookies-William-Hill-That-He-Will-Still-Be-Alive/Article/200905415292070


I am looking forward to adding the same story next year.

I am getting ready for work, the sun is shining , the weather is wonderful. We have another viewing on the house tomorrow. The person is coming back for a second viewing so we will see what happens with that.