Thursday, 31 July 2008

New page added

Siobhan has been working hard on the website and has opened the rememberance wall. It is beautiful and is there for anyone who wants to add their loved one to the page.
There is a link to send a message to Siobhan with the details of the person to be added.




I am feeling a little tired after my first full day of work today. I had my horrid, chalky protein drink which I know I have to have to put on weight.


It would be good to find one that does actually taste nice. I am now off for 3 days. Jeanette and I have decided to as Professor Vogl if I can change the appointment to 24th September as we will both be available then.

Back to work today

I am back to work today. The weather is still miserable, rain and grey clouds. Maybe tomorrow will be better as it will be August.
I am looking forward to seeing my team mates today as I have missed going to work. They make my working day wonderful. Our team leader is moving onto a different shift which will be sad as he is so supportive. I hope we get a team leader as good as him as he will be missed by all of us.
I am going to start the protein drinks again today as I have not been having them. The drin is supposed to taste of vanilla but it tastes of chalk!
It has to be done though as I need to go back to my oncologist knowing I have put on weight.
The symptoms seem to have gone now and I feel on top of the world.
I haven't come down since I found out about the shrinkage. I want to stay up here for a very, very long time.

Wednesday, 30 July 2008

Wednesday weigh in

Todays weight - 8st 10lb
I have lost weight as I have not eaten properly due to losing my appetite because of the treatment with the chemo, it only lasts a few days which is not too bad at all.
I haven't had my protein drinks (naughty...I know!)
I am feeling much better now and intend to put the weight back on again.

Rainy day

The weather has been terrible the past few days. It hasn't stopped raining but it hasn't put a dampener on how I feel either. I am still living in the sunshine.
I am getting ready for the furniture t be delivered on Friday.....yippeeee!!!
I got my new wigs today and spent some time with Siobhan, we treated ourselves to some new makeup. I have tons of the stuff and need to sort it out as I am sure some of my makeup dates back to my teens!
Kieran is with his dad as he has his 3 days off. I am back to work tomorrow which will be good as I have missed my friends. I am also looking for some support for my next Germany trip as Jeanette has prior arrangements. I am sure I will find a willing volunteer!

Tuesday, 29 July 2008

More wigs!!

I had £50 from work for winning the best dressed for the indulgence day a few weeks ago and decided as I couldn't find any clothes I liked I would put it towards wigs.
I have another 2 and they are beautiful.
I have had a lot of emails keeping me busy, it is so good to try and make a difference to so many people.
I have been sending details of the chemoembolization procedure for people who are interested.
I will be remembering to do my mistletoe jab tonight as last week I forgot.
I am back to work on Thursday and then off for 3 days.
The appetite is starting to return and I am feeling much better, most importantly, so full of life!

Dawn doing well.


I had an email from Dawn who I met up with on my last trip to Germany, She is doing well but was in a lot of pain as she was having her liver tumors lasered. She has to go back to Frankfurt again to have more tumors lasered and is, understandibly, nervous.
Dawn has been very instumental with my chemoembolization. She was already having it for her liver cancer and gave me a lot of very good tips about where to stay and what airport to go to. She gave me phone numbers and emails and has been a great support even though she was going through a bad time herself.
I met Dawn by linking on to her website, http://www.wigstowishes.org.uk/ after she was featured in a channel 4 documentary, the mummy daries.
She has had a 40% reduction in her tumors with chemoembolization. I really hope it keeps going in that direction for her.

Monday, 28 July 2008

Vitamin D for mesothelioma patients

Graeme, a new friend of the website, has found a link concerning vitimin D and Mesothelioma.

http://news.asbestos.com/2008/07/28/can-vitamin-d-help-people-with-mesothelioma/

Anymore links or information that would be useful on the site please let me know.
Phu_phita@hotmail.com


Dining set

I now have a dining set ....yay!
My sisters husband picked it up from Homebase for me this afternoon. It has been a very productive day.

Mesothelioma Bill

I have some information about payments for people who have Mesothelioma and are not intitled to payments because they have not worked with Asbestos.

http://www.opsi.gov.uk/si/si2008/draft/ukdsi_9780110818603_en_2

I hope this is helpful.
The bill will come into force in October 2008.

Homebase Victory!!!

I went to Home base armed with my receipt and information I had gained from another website. Quite a few people have had delivery problems with them.
I spoke to the customer services rep and asked when the furniture would be delivered. He said it would be another 14 days maybe more so I said I wanted my money back.
He called the department in their call centre and was told the suite was in but the table and chairs were discontinued. I asked him why he couldn't refund back the money for the table and chairs and send me the suite which was in Doncaster? He said if he did that it would be a new order and it would be 28 days again. I said a big, fat NO and asked for the whole lot to be refunded. He said he would have to email a dept to cancel the order and then I would get the payment back in my bank.
GGGrrrrr........ I really liked the suite and left the store ready to look else where.
When I got home I called Homebase/Argos and asked the customer services rep for the head office address as I had a complaint. I explained what I had been told and he said the suite was ready and the delivery date was....wait for it.........1st August!!!!
He put me through to a lady called Annette who was very helpful. She cancelled the table and chairs and returned the payment to my bank account (it will show up the end of the week) and said she was sorry I had been given wrong information.
After I finished talking to Annette, the phone rang and it was the man at Homebase/Argos. He had a table and 4 chairs in store. It was the same as I was looking for but the one I originally had was 6 chairs. He said would I like to look at it and I said I would and left to go to Homebase again. After all that, we now have a table and 4 chairs and a suite that should be delivered on Friday.....RESULT!!!!

Appetite returning

I have had my water with lemon juice before breakfast and gone back to my flaxseed granules as I find the flaxseed oil isn't as effective for me.
I am off to Homebase today to get my money back for furniture I order as I don't now when it is going to be delivered. I have waited the specified 28 days and have had a letter saying I will be contacted after the 8th August with information. That isn't good enough as I have been suite less for more than a month because we have been decorating.
I am going to look else where, the furniture we were going to have was perfect but I don't now when we will recieve it.

Sunday, 27 July 2008

Lazy Sunday afternoon

Kieran, Siobhan and I stayed home today. I have been feeling a little more tired these few days and have been trying to rest. With 6 weeks of school holidays ahead it will be difficult but I am sure we will cope.
Kieran is reciting his train timetables in the garden while bouncing his ball.
There has been a good response to the publicity and I have had a lot of emails from people wanting more information.
Professor Thomas Vogl is the Dr who performs the procedure. He works at the university clinic in Frankfurt Germany. Chemoembolization is usually performed for liver cancer but he is trialing it for Mesothelioma and so far it has been a success for me.
More information about the procedure can be found in the link below.

http://www.radiologyinfo.org/en/info.cfm?pg=chemoembol&bhcp=1

Any more information wanted about my treament please email me at
Phu_phita@hotmail.com

Saturday, 26 July 2008

The cupboard is up

After 3 or 4 attempts of getting the right parts in the correct places, the cupboard is up!
I had a good sllep in the chair afterwards as I tired myself out.
Kieran h: : as been reciting his train station time tables most of the day, I don't know how he remembers it.
I went out shopping on my own and had a little space away from trains!
It has been another good day and tomorrow we will go out and visit Kieran's friend as that will occupy him a lot more......NO MORE TRAINS PLEASE ........ : )
Mistletoe tonight and I won't forget it. I am booking the trip to Germany on 18th September as I am away with the family in August and Professor Vogl is busy the week after.

Another lovely day

I am feeling much better this morning as yesterday I was very tired and aching a little in the joints. That seems to have gone and the sun is shining, I have had a lovely cuddle with my gorgeous son, Kieran, this morning. What a way to start the day.
I am going to get the cupboard back up in the bedroom today as the room has clothes everywhere and is driving me crazy.

Well done Jill

Jill in Texas is doing very well. She is still in hospital after having an operation on 21st July.She was diagnosed in May 1996 and was given a few months to live. She had the surgery to remove the rt. lung and was cut open from front to back. The Dr removed a rib to be able to remove the lung easier, cut through the diaphragm, it looked good. Heart looked good, but she saw "numerous tumors" in the peritoneal. The cancer had not spread from the lung.
She has has constant diarrhea due to radiotherapy 34 years earlier. This can make things very difficult. I hope Jill continues to do well. She has a name for her tumor also, Mr Meso.
Theo and Mr Meso have become very good friends.

Friday, 25 July 2008

1st day towards the big 50!

I had a lovely meal last night with my children, Siobhan, Richard and Kieran. I had a birthday cake and the children sang 'happy birthday' with 2 of the waitresses. I also got my meal free as I had my driving license with me which showed my date of birth.
Kieran's dad joined us as we are still good friends even though we are divorced. I was so tired on Tuesday night and forgot to take my Mistletoe injection. I did it last night and am now feeling fluey and achy which is a symptom of the medication.

Argos Blues

I wasn't very happy with Argos as I purcased a new 3 peice suite and dining set from them which we were going to have on or around the 27th July. I have now recieved a letter to say they will contact me after 8th August as they have big demand for the furniture. They didn't say to me 'wait....we won't take your cash' so I will be calling them today.
We also had a cupboard from them which was put up a few weeks ago and te hanging rail broke. Siobhan, Seddon and I dismantled it as I was told that they would only replace the whole cupboard...ggrrrr..... and to wrap it in black bags and tape it up as I didn't have a box to put it in.
The delivery man brought the new cupboard and said he couldn't take the old one as it was not in a box and it has to go on a conveyer belt. He said he would call back the next day.....double ggrrrr. I too the new hanging rail out and put the broken one in and sealed up the box. The hanging rail broke because a large wood knot was at the centre of it.
So I now have a cupboard in black bags to put back together....triple ggrrrr....and the house is a complete mess.
Oh well......at least I can think about my wonderful result from Germany and life goes on regardless.

Thursday, 24 July 2008

Article in local paper

There is an article in my local paper tomorrow.

http://www.thisisplymouth.co.uk/news/DEBBIE-S-GREATEST-BIRTHDAY-PRESENT/article-236012-detail/article.html

It is a lovely piece. The picture is beautiful. I hope this gives the campaign a boost as I am going to start writing letters and bothering people about the treatment.

More information

I have had a lovely chat with a gentleman called Bernard who has been taking
Zell Oxygen / Immunocomplex and he has found that his tumor has not grown in a year.
I have added a link to the site.

http://www.regenerativenutrition.com/content.asp?id=43

There is also a maple syrup and bicarbonate mixture that can be taken.

http://www.regenerativenutrition.com/content.asp?id=490

The sugar from the maple syrup attracts the cancer cells and the bicarbonate kills them off.
This is good information, it is getting back to the naturopathic diet.
Thanks fro the information Bernard and let me know if there is anything else you find out!

The greatest gift.

I have been given the greatest birthday gift I could ever wish for. I am 49 years old today and am so happy with the news that the tumour is shrinking.
I am going to Frankfurt again in September for a 4th treatment.
This has to be arranged as I was given the 25th August but I have booked a holiday in a little cottage for the children and I and I don't want to cancel it.
I am going to celebrate with my children this evening, we will be going out for a meal.
Last year I was in Egypt which was wonderful but this one has to be the best.

Wednesday, 23 July 2008

Mistletoe tonight

I will do my mistletoe jab tonight. I forgot it yesterday as I was so busy and very tired from the journey and treatment.
Kieran came home from school and his t-shirt was covered in signatures. It was his last day at his school. In September he will move onto senior school.
He is going to stay with his dad tomorrow.
I am going to have a nice, relaxing bath and an early night. Tomorrow I am going to chill out.

ITV

I went out to central park in Plymouth today and did an interview with ITV for the local news. I am hoping this coverage will help towards getting more information and treatment in the UK.
I hope that I and many others can get the message across that there is something that works.
I went to see my GP today and got a sick note for work. I am feeling a little tired today and a slight bit of nausea. Other than that I am feeling really well.
I also went to the cemetary as I have got a plaque for my dad. It is now ready and I took a look at it. It is lovely and opposite my cousins plaque.

Wednesday weigh in

Todays wieght - 9st 2lb
Wow....these protien drinks are certainly piling on the pounds. I gave a little cheer yesterday as my trousers were getting tight, Jeanette laughed as she thought it was funny to hear someone cheering about weight going on.
The BBC local news has my story on it. The bigger interview will be at lunch time and the evening news.
I want to see the chemoembolization procedure done in the UK as there are a lot of people that ca benefit from this treatment and cannot afford to travel to Germany and pay for the procedure. I am in a very fortunate position and I do realise how lucky I am.

Tuesday, 22 July 2008

BBC local news

I did some filming for the BBC local news today about the success of the tumor shrinking. They filmed me in an interview with the website, picking Kieran up from school and going for a short walk with Kieran.
It will be featured on the local news tomorrow.
I was contacted by them to do something and it feel right into place as I was going to speak to the media about something going out.
I am feeling very tired tonight. It is so good to see the children.
Jeanette has been amazing again. She drove home from Bristol and leant me her house to be filmed in.
I will pop into work tomorrow and see the guys and give them some weets for their pirate dress up day.

Safe landing and then home

Jeanette and I had a good trip on the plane back to Bristol. I still have my pressure pad on as the vein Professor Vogl goes into needs constant pressure on it for 24 hours.
Jeanette drove back to Plymouth in her car while I relaxed to the sounds of David Essex. I have had a call from the BBC who I have kept in touch with and they want to do a piece to camera about the results from the chemo embolization.
This is good news as I was going to ask them about doing it. I am shatterewd but will be doing the filming today. I am picking Kieran up from school, it will be good to see him.
Jeanette and I met Dawn and her friend, Sarah at her hotel last night which was an extra bonus but has made us very tired today. We could have chatted all night. We left Dawn and Sarah at around 1:ooam and got up this morning at 5:30....ouch!!!
It was good to meet such an inspirational lady who has a lot more going on than I do.

Monday, 21 July 2008

More good news from Germany!

Theo has taken another 5-8% of his belongings and left. I `am so pleased. Jeanette was more excited than me and ran screaming, very discreetly, through the corridors of the university clinic. Professor Vogl saw us on the ward around 8:30pm German time and told us the good news. I have been told there is another treatment in August. I thought there were only 3 but now there are 4. We will be meeting Dawn soon and will catch up with her about what has been happening.

Good Morning

It is a beautiful morning in Frankfurt, the sun is streaming through the window. I am looking forward to seeing Professor Vogl and finding out if there are any more improvements with the Chemoembolization.


Jeanette and I will be leaving the hotel at 9:00am for the appointment at 10:00am. Theo seems to love it here. He has settled in very well and hopefully he has packed more of his belongings for a longer stay.




Good luck to Jill in Texas who is having an operation today. She has Mesothelioma and it is very advanced. She is a fantastic lady who has been through a lot. Her tumor is Mr Meso and she is waiting for him to move on.


Mr Meso, start talking to Theo, he will tell you how good it is outside and how to cope on your own with out Jill. Maybe you could visit him in Germany, make it a long trip!!!


Jeannette and I went into Frankfurt last night and ended up in the middle of what looked like a gay pride rally. There was a comedian on stage who, from the audiences reaction, was funny. We couldn't understand a thing. We recognized the Abba song though!
We walked around Frankfurt town centre and found the biggest bird bath ever!
I think the pigeon was very proud of himself.
Well I have to go and get showered. I am going to meet Dawn tonight if I feel up to it. She is coming in for her treatment and we have been in touch on email for a while. Dawn has her own website. www.wigstowishes.org.uk and has been featured on channels fours Mummy diaries. I will add a blog with the results when we return.


Sunday, 20 July 2008

Ready to go for the last time!

I am all packed and ready to go.
Jeanette and I will be off to Germany for my last treatmnet with Professor Vogl. I really hope that I get a goos result like the last one. If not, I am happy with the amazing result already. I am not going to be angry if there is no more shrinage,. I have gained so much from this and hope to put it out in the public domain when I come back. Auf wedersein!

Saturday, 19 July 2008

Welcome to the new look website.

Siobhan has been very busy getting the new look website back on line.
The website went down because the company that hosted the website was sold and the director didn't tell us.
Apologies to everyone who tried to log on the the site. All is good now and I will update members with the information.

It has been a very busy day today. My little bean, Kiean got home around midnight last night and enjoyed his trip to Disneyland, Paris.
I dropped him off at his friends house this morning and then went into work.
I got a call from Siobhan while I was in work around 6:30pm to say the kitchen ceiling had water dripping from the bathroom.
I was going to leave at 7:00pm any way and called my friend, Wendy, who rushed around with her fianc'e to sort it out as James wasn't available.
We will get it all sorted tomorrow.
I will be leaving for Germany in the morning with Jeanette. She has been amazing, I appreciate what she has done for me, it means so much.

Friday, 18 July 2008

Meso and me off air?

I tried to log into my website today and it says the accont has been suspended.
I am looking into what has happened.

I am waiting for a phone call to say Kieran is back and so far there is nothing.
I really want to see him and give him a really fat hug.
I hope he has had a wonderful time but I won't be able to settle until I hear he is safetly home.

Thursday, 17 July 2008

Back to work today

I returned to work today and this will be my last 3 days before Germany.
Kieran will be returning from Paris tomorrow. He is staying with his friend while I am away.
I am going to see him on Saturday before I travel to Germany.
I have missed him so much and can't wait to hear his stories about his adventure.
It will be dressing up day in work on Wednesday and I will miss it :(
I will be away from work due to the treatment. The team will be dressing up as pirates.
I hope they have a good time.

...and for some good news


Congratulations to Rory O'neill and his good lady who are the proud parents of a little boy.

In the words of Rory,

"I am working with Cormac James O’Neill beside me in the Hazards office. He is nearly full grown (9lb 14oz/448g).

Born at 12.39am yesterday, 16 July. Labour lasted 28 hours with a nice little ambulance ride disrupting the home birth after 24 hours – Cormac (CJ) was intent on staying put".

I am sure I can say on behalf f everyone who logs onto Meso and Me, Congratulations to the new family.

Good luck and all the best for the future.


Wednesday, 16 July 2008

Lunch with Helen

I went to lunch with my friend, Helen, today. She will be looking after Kieran for me while I am in Germany. Helen's son, Stephen is good friends with Kieran and I am sure they will have a great time.
We went to the school coffee morning before lunch and discusssed how it would be the last one as the boys would be leaving to attend senior school in September. It's the end of an era and the start of adult hood for our boys.

I stand corrected!

My friend, Julie, contacted me and has informed me that I have added up the weight wrong. Thanks Julie, I had bee weighed at the hospital when I saw my oncologist and was 8st 7lb. I then weighed myself a few days later and I was 8st 10lb and todays weight is 8st 11lb. That means I have put on 4lb and not 3 since 4th July. Yahoo!!! Suzy says the way I detail my diary is like Bridgette Jones. Big pants next Suzy.... : )

Wednesday Weigh in

Todays weight - 8st 11 lb
I have put on another pound since the weekend!
I have been drinking a high protien soya drink which is supposed to be vanilla flavour, but I haven't found that yet. Maybe it is at the bottom of the tin.
It seems to be working. I also had fish and chips last night, Dr's orders.
I am going to my sons coffee morning today. I have decided to get a trophy cabinet for his school as a thank you as they have done so much for Kieran. He had a bad start with school as we didn't know that he had Autism at the time. It was a struggle getting him out of main stream school as the code of practice changed to include all children into a main stream school.
He has done very well at his school, his dad and I appreciate all they have done for him, hence the trophy cabinet. The trophies are earnt by the children for good work aqnd every Friday there is a good work assembly, children are chosen from different classes and for different reasons to recieve the trophies.
Chris, a gentleman who makes the cabinets, came to school to measure up the area it will be.
The bathroom is being put in today and the stair carpet is going down. Another sep towards the house sale.

Tuesday, 15 July 2008

Birthday meal.

I enjoyed my meal with my babies. Kieran is in Paris but Siobhan and Richard were there and it meant a lot. Siobhan's boyfriend, Seddon was with us too and we had a good family meal.
I met my friend, Tina, while we were out. I haven't seen her for a few weeks. The place we went is great for birthdays. We took a cake in with us and when it came to dessert time, the waitress lit the candles and the place was put in darkness and the sound of happy birthday played through the speakers.

After the meal we went into the arcade and Rich wanted a game on Mario Kart. He challenged Seddon and they both won a game each. They took stupid pictures of them selves on the arcade game which was a funny. Richard was Waluigi and Seddon was Mario.


I then went to see my sister, Wendy, and had a cuppa with her.



Today has been really good. We really missed Kieran tonight and we will have a meal out when he comes back I am sure.

Happy Birthday Richard



Happy Birthday to my son, Richard.
He is pictured with May and Rosalie who are two beautiful girls we met in Egypt last year. They play in a band called "Fun2c" and they were briliant.
Richard is 19 years old today.
He had quite a bad start in life as he was born unable to swallow, Oesophageal Atresia and Trachoe Oesophageal Fistula (TOFS).
His oesopgaus (food pipe) was connected to his Trachea (Wind pipe) and this was removed at Bristol childrens Hospital where he had the repair operation the day after he was born.

Thankfully, we got through the worst years and he is now a healthy man.

I found a brilliant birthday card that all parents can relate to.
The card says,
"HERE IT IS SON, THE LATEST BREAKTHROUGH IN BIRTHDAY CARDS"
and in the centre it says,
"YOU CAN READ IT WITHOUT TAKING YOUR EYES OFF THE TELLY!"

He is 19 years old today and we will be celebrating by taking him out for a meal.


Have a great day Ric!

Monday, 14 July 2008

Draft Mesothelioma bill

this is quite a little ditty.

http://www.niassembly.gov.uk/social/2007mandate/moe/080515_mesothelioma.htm

The paymants are rediculous and don't compensate towards the loss due to the illness.

I am still trying to find information about the bill. All I can find is th Mesothelioma bill relating to Northern Ireland. If anyone does find anything, can you please email me at:

Phu_phita@hotmail.com

Many thanks,
Debbie

new bathroom suite

I purchased a new bathroom suite this morning which will be fitted tomorrow. I learnt something new today. The cistern with the toilet is like the one pictured below.

This means that the flush is the button on the top. I didn't know that it had a big button to push for number 2's and a little button for the wee wee. Trivial I know but I thought it was brilliant as water is saved.

Siobhan is busy sorting out the website. The format of it will change soon and it is looking good. She has built a rememberance page and "the soap box" for information and getting to know more about the people who help make this blog so wonderful.

I bought a gift for Professor Vogl as he has been so brilliant with the procedure. I appreciate so much just what he has done for me and for my family.

3 days off and Germany next week

This is my last 3 days off before Germany. I have so much to do, decorating is still being done, I need to clear the living room as the furniture will be here within the next week or two. I have some little decorating jobs to do. The real work is being done by James and his team.
He is taking a well earned break so not sure when the bathroom suite can be fitted.
Not far to go now. It is looking good.
I will be glad when it is all done as I will be able to put the house up for sale. I am not in any rush to move so we will see what happens with that.
Jill in Texas will behaving quite a major operation on 21st July and I hope all goes well for her.
She has Mr Meso to contend with. Maybe Theo and Mr Meso cold become friends and leave us alone.

Sunday, 13 July 2008

2lb gained!!!

I went out last night after work and had a meal with my sister, Wendy, her husband and her daughter. It was to celebrate my niece's birthday, she was 19 years old on 10t July. I got home around midnight so am tired this morning but am still feeling great inside.
I weighed myself this morning and I have put on 2lb!
I have started to drink soya protein milk shakes and it seems to be working. I am going to do a Wednesday weigh in every week and keep track of it. My oncologist is very concerned about my weight and I need to go back to see him with weight gained. It's a shame as I feel well being the weight I am as I have reached my BMI (8st 7lb) but if he feels I need to put it on, I will do it.
I am working today and have 3 days off tomorrow until Thursday.
Kieran is having a good time, he is loving the roller coaster rides.

Friday, 11 July 2008

Safe landing in Paris.

I have waited all day for a text or call from Kieran's dad to say he had arrived safetly in Paris and there has been nothing at all. I have been so worried about Kieran, worrying that something may have happened. I had a call from his dad as I got home from work. Kieran's dad had not activated roaming on his account. When any one has a contract phone, they have to be credit checked and the international call bar is removed. He hadn't done this, therefore, he could not call back to the UK. He works for Orange aswell and should know this. He has now called Orange and will hopefully get the bar lifted and will be able to send texts to me.
Work has been quite tiring today as it is the first day back.
I treated myself to a glass of red wine when I got home.
I am out after work tomorrow as my neice has a birthday meal arranged, she was 19 on 10th July. I remember being in hospital having my son when she was born ( Wendy and I were in hospital at the same time) and being very upset when my sister, Wendy, had had her baby before me. Her daughter was due on 22nd July and my son the 1st July. My son eventually entered the world on 15th July.
I look back and smile at it now ut I was so disappointed at the time.

Back to work, first of 3.

My little man is on his way to Paris. I hope he has a wonderful time but I miss him so much already.
I am back to work today and that will take my mind off it for a few hours. I have told him to text or call me to let me know he got there safely and am sure he will be fine.

I have just had a phone call to say that Kieran got to Bristol ok and the flight will be in 2 hours time.

Have a good time baked bean, I will see you when you get back.

Thursday, 10 July 2008

First class male!

Kieran enjoyed his trip on the train. We travelled to Penzance and met up with Sue who lost 2 of her sons to Mesothelioma. She is so supportive and is happy with my news but also dissappointed that her son,Michel, never got the oppurtunity I have had. Sue has a lovely little dog called Jenny who Kieran and I fell in love with. It has been a lovely day today, the train was delayed but that didn't spoil anything.

We got back home around 7:45pm and had something to eat before my little bean went off with his dad as he is going to Disneyland, Paris tomorrow. I will miss him so much and have asked him to let me know that he gets there ok.


What with him moving on to big school and this little trip, it has been quite a hard week but I am sure I will cope and he will enjoy all of it.

Penzance trip

Kieran and I are going to Penzance today. He is really looking forward to it as we will be going on a train......yay!
He has already told me about the delays this morning as he does every morning. He tells me when there is a delay due to a person on the track, vandalism and all the other causes.
The passage way is still being decorated so we will be out of the way while that is being done.
Kieran will be packing his suit case when we get back. He is off to Disneyland Paris with his dad and I am going to miss him so much.
He will be back on 18th July, I hope he has a wonderful time.
We went to Disneyland Florida this time last year and it was wonderful. Kieran has wanted to go back again but
it has not been possible this year as the Germany trip has taken over. We will go to Florida again as it was stunning.

I am still searching for someone who can do Dendritic cell vaccine for Mesothelioma in the UK. It isn't looking good at the moment. Heather and Alan sent a link for a Dr in the UK but that looks fruitless. It is about time Mesothelioma was included in treatments and trials like other cancers. It is so widespread now and a lot more people will benefit from treatment as there is very little available. I am still looking as are all the wonderful people that support this website and we don't give up very easily. The search continues!

Wednesday, 9 July 2008

Trains again

I took Kieran to see my GP this morning and he isn't unwell. My GP agreed with me that he is anxious and making himself sick.
I took him to his special place again......yes.....the train station!
We watched 2 trains come and go and then left as it was so wet and windy.
I wanted to check the train seats for tomorrow and all is good.


I rang my oncologist and he has given me the same place I contacted last week. St Georges Hospital in London. Professor Dalgleish won't have a lab to make the vaccine until next year so I am back to square one.

Oh Well.....tomorrow the search will continue.

Canoeing not happening today!!!

I am not going canoeing today due to this wondeful July weather.
Kieran has been sick again, He doesn't have anything else wrong, he isn't unwell, doesn't have a temprature and does not have lose bowl movements. I am sure he is worried about something, transition between schools maybe, and doesn't know how to say he is nervous.
School won't have him there for 48 hours as he is being sick so he is off again. I have made an appointment with my GP to see if he agrees with me or if there is something else underlying. He won't be back at school now for over a week and this is a crucial time for him as he will be leaving all he knows to begin at the start again.
My ex, in his wisdom, booked July to take him to Disneyland, Paris, which is lovely but not a good move with Kieran and his move to senior school.

On another note, I am going to ring my oncologist this morning and find out what his secretary wants to talk to me about. I hope it is the name of a Dr who can perform Dentritc Cell vaccine.
I wait in anticipation.

Tuesday, 8 July 2008

Message from my oncologist.

I had a message left on my phone today to contact my oncologists secretary.......I am feeling all shaky inside with anticipation wondering if it is news of a Dr who can perform the dendritic cell vaccine.
(Not the Dr Who although that would be very nice!!!!)
I will call back tomorrow and find out.
I can't wait to find out exactly what it is he wants to tell me.

Chilled out and busy

I took Kieran to his new school today, I did feel a little choked when I left him as this is my baby and he is growing too fast.
I have found with Siobhan and Richard that once they started senior school, they got more independant and needed me less and turned into mini adults.

This is so hard as he is my youngest and it is harder to let go but I know I have to and let him find his place in this big wide world that isn't always kind to those who are different.

I left Kieran at his school and then went to see Jim and Sandra, my travel agents, who sorted out all the flights and hotel bookings for me.
I then went out to visit my sister, Wendy, who ended up coming in to Plymouth city centre with me aqs I wanted to get a wet weather coat just incase I go canoeing tomorrow.

I hope it is dry, I don't mind a little rain but not a down poor..........you listening dad?

I took Wendy home and went to pick up Kieran from his new school. He had a very good day and enjoyed the playground especially.

I came home and got a call from James, my DIY man, who said the painter would be around tomorrow to do the passage way. Siobhan Seddon and I have cleared it ready.

Tomorrow Kieran is at senior school again and all being well....I will be going canoeing with my work mates.

400th Blog!!! and Kieran moving on

It is the 400th blog today!
This is also the day that Kieran goes to his new school. He is going today and tomorrow to get him ready for when he starts in September.
He says he is looking forward to it and he will not be alone, his friend, Stephen, will be going with him as well as they start at the same time.
He is growing up so fast and is a lovely little boy who enjoys his trains and his games on his consoles.
We will be having a train journey on Thursday which he is looking forward to.
I hope he enjoys today and seeing his friends from his school who have moved on to the new one.

Monday, 7 July 2008

3 days off

I have finished my rotation in work. I had an hour offline so left at 7:00pm instead of 8:00pm.
My manager organises an offline lottery and once a week someone wins it and I did this week.....woohoo!!

I have worn my tiara all day as I want to feel as good outside as I do inside and anything I gain in work like stats or offline lottery, I will wear it. Don't know how long it qwill last and people may get fed up with my happiness but I am not bothered by that at all.
Kieran is off to his senior school tomorrow for the day. He says he is looking forward to it which is good.
I am so pleased to be able to be here for this because it was all so different 18months ago.
He is also off to Disney land Paris next week with his dad and I will really miss him.
I am supposed to be going canoeing on Wednesday but the weather is terrible. Hopefully the rain will stop and we will get our team trip.
I am adding a website from Jill as she has been fighting her Mesothelioma for a while now and has scucceeded when she was told she had little time left. She found this article which may be of interest.

Saturday, 5 July 2008

Work again.

I went back to work today and all is still good.
I did my mistletoe last night and forgot to call Dr Maria last week as I have been so busy with the house, treament and all the family stuff.
I wll ring and apologise to her next week.

Just a quick note of thanks to Jill who emailed Karry about pain relief.
Thanks Jill for responding and it was very useful information.
Jill is from Kemah,TX which is near Houston.
Anyone else who has information about pain relief can email it to Karry at

Ktxr2i@aol.com

Friday, 4 July 2008

Celebrating the news

I went out this evening with Siobhan, Kieran and Siobhan's boyfriend, Seddon, to celebrate my good news. I haven't felt this happy for a long time.

This is such a good feeling and I want it to go on for a long time.
It was good to toast the next few years as I can see my furture on the horizon and it looks good.
I am so grateful to Professor Vogl for helping me as I feel like I have found a little miracle.
Everyone with Mesothelioma should get this treatment and hopefully now it will be possible.

More good news

My oncologist was brilliant this morning.
I was with my friend, Jeanette and my daughter, Siobhan. We arrived there at 9:15am, we were called in early and my friend, Wendy, was late, not her fault as the appointment was for 9:30am.
At first my oncologist was bubbling about the lymph node shrinking.....yay!!!........ and then went on to say that he couldn't predict what mesothelioma will do and that the disease was now very stable. All good I thought and then I handed him the information from Germany and his face dropped. He was rather shocked to see the paper work for the 2 embolizations I have had.
He was very pesamistic about the procedures until Jeanette told him that 2 different veins were used and that she had watched the whole procedure on the screen in the theatre.
He then realised that Professor Vogl was very reputable. He asked for some more information about the procedures as he wants to know more about the area where the embolization is administered.
He then said that Chemoembolization is performed in Derriford Hospital, Plymouth for other cancers but not for Mesothelioma. He said he was going to discuss this with the radiologist and I asked him if it could be done for Mesothelioma in Plymouth as it is shown to work. He was very positive about it and said he wanted to show the info to others involved with Chemoembolization in Plymouth.

I also asked about Dendirtic cell vaccine and he is going to look into that and let me know if he can find some one in the UK who can do it. He has also commented again about my weight loss and has prescribed fish and chips 3 times a week!
He is now monitoring my weight so I really do need to start putting it back on again even though I feel better for reaching my BMI.


All in all it has been a very good morning. If I can persuade Plymouth's hospital to take on this procedure then hopefully it can be done all over the country.


My friend, Julie looked after Kieran for me as he was off school again. I went out to pick up Kieran who had been watching......guess what.........yes......TRAINS......... as Julie can see them from her kitchen window.
He was in his element. We then went into town and I treated myself to a nintendo DS and a game .... SPACE INVADERS!!!
Julie gave me a bottle of champagne to celebrate this good news.

Thursday, 3 July 2008

Another busy day

I have been tying up lose ends today, sorting out all those little jobs that need doing. Kieran was home from school again today as he was sick again last night. He is well in himself and eating all his meals but it is now and again he is sick. He is not going to school today or tomorrow so He became my PA (personal assistant) for the day.

He wrote a list of things to do and reminded me about the chores and ticked off each one as we did them.
First thing was post office as I wanted to photo copy the procedure I had done in Germany by Professor Vogl to give to my oncologist tomorrow.

We then went to the bank to get some money for 2 of the items on the list and then off to the solicitors to finalise the transfer of propery as it will all be in my name. That was one payment, and the second, the cemetary.



I had a letter telling me that the 5 years was now up on the plaque done for my cousin, Robert, who died too soon in 2003 at the age of 41. He was like a brother to me and I still miss him today. I renewed Robert's and also ordered one for my dad, Philip. The inscription will read "when you find our tears in the ocean, we will stop loving you".



That one should be ready in 6 weeks which will be in time for the second anniversary of his death.
We then went to Robert's plaque and left some flowers there and found that some bright spark had taken Robert's vase.
Kieran was very good and filled another vase we had with water and helped to put the flowers in the vase.
We then went to .....guess where........ Plymouth railway station!!!!
I booked us some tickets to travel to Penzance on 10th July as we are going to visit Sue Hall.
Sue lost her son, Michel, to Mesothelioma recently and has invited us down to where she lives. I got the tickets and then made my way to the station to see some trains enter and leave the station.....yippeee!!!
We left there after around 2 hours.......yawn..........and went home. Kieran is a lovely boy but I keep telling him,,,,I HATE TRAINS!!!! he just laughs at me and carries on with what he is doing. He has been a very good PA today so going to the station was his payment.

Tomorrow is going to be a good day, I had an email from my friend, Julie, who has told me to be positive and not to worry about what he said last time and I know she is right so I am going to hold my head up high and be proud tomorrow and let him know that all is good and not to be nagative. I will let you know what happens.

Wednesday, 2 July 2008

Pain relief

I have had an email from Karry who wants to know what pain relief every one uses as her dad has some discomfort with his Mesothelioma. He is currently using 75mcg/hr fentanyl patches 8 paracetamol when needed and oramorph when needed.Any one with any other ideas or helpful hintscan contact Karry via email at

Ktxr2i@aol.com

I have told her that I take co-codomal with paracetomal, Ibuprofen is something that is reccommended but I am allergic to it.Thanks for taking the time to respond and I know Karry will appreciate any help or advice she can get.Any information provided is advice only and should not be taken as medical advice. Always talk to your GP about any concerns.

Strange dreams last night

Last night I dreamt about seeing my oncologist on Friday. It was so negative and strange.
He told me that I could only ever have 8% shrinkage with Theo. He was adamant that was all I would get and I felt so unhappy. I realise he couldn't tell me that as Theo has shrunk by 10%.
I hope it is a reverse dream and he is more positive this time.
I also dreamt about my daughter at the top window of a 2 storey house with her old school uniform on and she was closing the windows as I looked on from outside.
I have been sorting out Kieran's uniform for his new schooll so that could be why Siobhan was wearing a uniform but I don't know why she is closing the window.........weird!
I went to Kiearan's school coffee morning this morning and had a foot massage....'sigh'....and then went for lunch with my friend Helen.
I took some of Kieran's toys to a charity shop as he doesn't play with them anymore and in his words "I am 11 now"!

Here we go again!!

It is the same old thing, CT scan results coming up and my mind is racing with all thoughts of what my oncologist may say. I can't sleep as I am worried he will snuff out all this happiness I have and I don't want that to happen. I have been feeling so positive lately and I don't want it spoilt.

I am hoping he will be pleased with the result I have had from Germany but know what he said last time I saw him and it still worries me.
Kieran is back to school today after being off ill for about a week now. His school has a coffee morning this morning which I will be attending.
All is so good at the moment and I want it to stay like that.

I did my Mistletoe jab last night which I am sure is a great help with how I feel and the result I got.
I don't like having restless nights and I was going to make a hot milk drink but all my soya milk has gone. It is so lovely having a normal family life. A little thing like all the soya milk going is wonderful, this is as normal as it gets!
I was just looking at last years July events and I was in Florida enjoying the sunshine.
That was a wonderful holiday and I didn't know then about the result I have now as I commented on my CT scan back then and hoped by some miracle it had shrunk,
I also said "I can dream can't I?" How things have changed in one year!



Tuesday, 1 July 2008

Pain relief

I have had an email from Karry who wants to know what pain relief every one uses as her dad has some discomfort with his Mesothelioma. He is currently using 75mcg/hr fentanyl patches 8 paracetamol when needed and oramorph when needed.
Any one with any other ideas or helpful hints
can contact Karry via email at

Ktxr2i@aol.com

I have told her that I take co-codomal with paracetomal, Ibuprofen is something that is reccommended but I am allergic to it.
Thanks for taking the time to respond and I know Karry will appreciate any help or advice she can get.


Any information provided is advice only and should not be taken as medical advice. Always talk to your GP about any concerns.

Prizes galore

I went into work today and it was good to see all my friends. I picked up my prize for best dressed on Indulgence day, £50 in high street vouchers!!!
I wore my tiara all day as I did so well and I feel so well inside that I want to wear it forever. I am proud of myself at the moment as Theo seems to be doing what I want him to do and stay in Germany!
I won another prize from a coffee morning I went to, a little candle shaped like a cake.
My third prize was Theo shrinking. Life is good at the moment, I hope it continues.

Back to work

I am back to work this morning. All has been very good with the procedure. The symptoms were much less than the first procedure.
I am looking forward to seeing all my work mates as they are all a great support to me and keep me going.
Kieran is not at scholl today but will hopefully be back tomorrow as he has had a tummy bug. His dad and I have had it, I am sure my sickness was that and not the procedure or the mistletoe.
I only have today to work and will have my 3 days off on wed, Thur, Fri and will catch up a bit more with the house and friends.
Friday I will find out a little more about what Theo is doing as I have my oncology appointment.
Hopefully he is enjoying Germany and doesn't want to come back. He is welcome to stay in Theodore Stern Kia 7 for as longs he wants to.
Don't hurry back Theo!