Saturday, 28 February 2009

Remembering Maureen Chaplin

I am adding a rememberance blog today for Councillor Maureen Chaplin.
I am adding a link below which gives more information about her and her civic duties.

It is always sad when another person passes away with this disease. This only makes us all want to fight more to right it in their memory.

She like many others hasn't gone, she is on our shoulders with many others who have passed.

Todays blog is dedicated to Maureen and condolences are sent to her family from all at Mesothelioma and me.

Friday, 27 February 2009

Wow....what a night last night!!! Siobhan and I went to the 02 arena to see the Cure play and they were brilliant, especially Robert Smith. I have never seen them play live but has loved them since I heard Love cats. I loved it, Robert, Jason, Simon and Porl were on top form, no one was let down by them.

They played a lot of old stuff and some songs from the new album. The place erupted with joy when they did an encore and played 4 songs from their early album "3 imaginary boys". I loved it and could have listened to them all night.We got back to the hotel about 12:00am and then had to get up early this morning to get a train to Newcastle at 6:15am. Siobhan didn't sleep well as the hotel was a little noisy. She eventually had about 2 hours and was very tired the next day.
Chris's AMD meeting went well and I will add a report about the day later as I am shattered. We are having a relaxing day tomorrow and back to Plymouth on Sunday.
I have to say a very big THANKYOU to my baby girl, Siobhan, who bought me the Cure tickets as a Christmas present. Apart from lasts years gift of my miracle, I have to say it is one of the best gifts I have had, She bought me the ticket to see the Cure and the gorgeous Robert Smith.
I hope I get the oppurtunity to see him and the Cure lads again.
It was one fabulous night and they deserved there Godlike Geniuses award from Shockwaves NME.


Thursday, 26 February 2009

A great night last night.

I went out to a little country pub called "the who'd of thought it" last night with Mr S.
It was really lovely to see him and hear all about his New York adventure.
I am off to see the other Mr S that is Robert Smith tonight....oh didn't I say : )
I am looking forward to having a good weekend with my daughter, Siobhan, as we don't get a lot of time together. We are going to have a chill out day on Saturday and fly back home on Sunday.

Friday is Action Mesothelioma day and Jackie Lowe will be holding a small get together at 10:3oam at Saltram House..we planted a tree last year and Jackie will be planting some snowdrops in memory of those that have lost their lives to Mesothelioma.
I am at another meeting in Gateshead as I was asked to do a talk which I am very proud to do.

Chris Knighton lost her Husband, Mick, to Mesothelioma and has worked very hard to get a group together to raise funds for research and support.
The same can be said of June Hancock Fund and Hasag...all set up by family members who lost their loved ones to it. They all have meetings, Diane of Hasag is having a dove release and Kim and Mike from June Hancock will be having an open meeting in Leeds.
Hopefully we will get a good bit of publicity from these events.

I went for lunch with my friend, Julie, yesterday and went to see the venue where I will be holding my birthday party and it isn't in Plympton as I thought, it is in Ivybridge. It is a very pretty place.

Tuesday, 24 February 2009

Well done Steph!!!



I have received news from Germany...


Steph's tumour has shrunk by more than 20%!!!


I am so pleased for her and I am sure she is ecstatic with the news.


I will go and see her when she gets home and congratulate her properly




New hair



Work went very well and my new look was applauded by my friends. It has boosted my confidence even more...life is wonderful : )

Good luck x 2 today

Good luck to Steph who is in Germany about to have her second treatment and get the results of her first.


Also good luck to John from Cornwall who had his first treatment yesterday.


I really hope all goes well for them and that all this work helps to get the treatment trialled in the UK.


I did my mistletoe on Sunday night and will do my next jab tomorrow. I still haven't contacted Dr Maria for a consultation, I need to do that!!

I am working today and then I am off to see the lovely Mr Robert Smith and the Cure at the 02 on Thursday with my daughter, Siobhan, who bought me the ticket for Christmas.
We are then off to Newcastle on Friday morning for the Action Mesothelioma day meeting.

I am off to work today....Wigless!!!

I was so busy this morning and not even thinking about my hair when I had a text from my friend, Julie, saying "thinking of you".

I was a little confused, not unusual in the morning, And tet back "why?

She then reminded me I was going to work wigless.....Oh yes...of course...how could I forget!!!Kieran is staying with his dad tonight until Sunday. I am going out to eat with Mr S on Wednesday as he has returned from New York. I am looking forward to hearing about all his adventures.

Monday, 23 February 2009

Action Mesothelioma Day Plymouth

Jackie Lowe will be planting 35 Snowdrops at the tree that was planted to commemorate Action Mesothelioma day.
It will be at 10:30am at Saltram house grounds on Friday 27th February 2009.
I will be at a meeting commemorating the same day in Gateshead and am hoping a lot of people support this day.
Hopefully there will be a lot of publicity on this day and more awareness about asbestos and Mesothel

Sunday, 22 February 2009

I did it!!!

I went in to town this afternoon, without my wig on!!! This was another milestone for me as I have worn wigs since 2005-2006 when I first noticed I had alopecia.
I dealt with that issue pretty quickly when I found out I had Mesothelioma.

I was a little cold around the ears as I am usually covered up. The wigs have been getting uncomfortable as the hair growing underneath was so thick.
I am really proud of myself for taking the step to the next level of my new life I have.
Kieran enjoyed his bus watch We didn't stay out to long looking at buses, he asked if he could get the high school musical sing star which I agreed to as he has been so good lately. His behaviour seems to be under control.

Todays the day!!


I have decided that there is no time like the present so I am losing the wigs as from today.

They have been wonderful and I am going to keep them as they have been a big part of my life and my personality.

I have got my hair back and am going to venture out into the big wide world with pride.

I am so pleased it has grown back but on the other hand, will miss the wigs.

I can't believe all that has happened in the past year...it has been an amazing journey and I hope it continues.

I am going on a bus watch with Kieran today, with my new hair!!!

Steph is back to Germany tomorrow for her second treatment and I am so hoping she is told her tumour has shrunk.

I will update the blog when I find out.

Saturday, 21 February 2009

Brilliant night out




Siobhan, Kieran and I had a lovely evening. Rich is at his friends so wasn't with us. We went to Old Orleans, a place at Warner village, Plymouth for a meal and it was lovely. On the way home we sang "fix you" by cold play and "Amarillo" by Tony Christie and had a great time, it was brilliant.

We haven't been out to eat together for a while so this was great.

Rich should be back home tomorrow. I am going to get a couple more values for the house. James still hasn't finished the bathroom so that needs to be done before I can put it up for sale.

I am adding some pictures of the crazy kittens as they have been having fun with a card board box.

Home with the family

Kieran, Siobhan and I went out for lunch today. We haven't done that for a while. We went to the Mount Batten pub which is opposite Plymouth Barbican. It was lovely. Rich was out last night with his mates. The Mesothelioma petition is now up to 901 which is great and Angela has had a response from John Sutton who is contacting the PCT. Not sure which one but hopefully they will look into this disease.

I am looking forward to Thursday when I get y Christmas Present.....seeing the Cure live!!!

The kittens are growing fast, they are 8 months old now and are out and about doing their own thing.

Stork is still suckling and I think he always will. The vet said he would grow out of it but, every morning he suckles my cotton pillow case.

Kieran has had a good half term. He went to the local bus station and had a look around. The people were so impressed with his knowledge, they have offered him an apprenticeship!!!


Friday, 20 February 2009

Strange dream

I Had the weirdest dream last night. I dreamt I met Jade Goody and she was very tiny and thin. Her mother was holding a newspaper, with both hands surprisingly!!
I was hugging Jade and telling her about the German treatment when she turned into a tiny baby and started to be sick.
She was choking and wasn't breathing but she didn't turn blue.
I then woke up and didn't get to see if she lived.
I do like to analyse things and I felt the baby was a new life or a another chance at life and the sickness was the cancer being removed from the body.
It may well mean something else.
I have got a page on facebook to try and contact her about the treatment.
I have tried quite a few avenues and nothing is working.

http://www.facebook.com/group.php?gid=65898893974&ref=mf

I will see what happens with this one.

Thursday, 19 February 2009

Well done number 3!!!

I have had a phone call from another family who have been affected by Mesothelioma and the gentleman has had a 10% reduction with his 1st treatment. I am so pleased. That is 3 people now who have benefited from the treatment. I am so sorry that Nicky didn't get the chance to see if it would have worked for her.
I am working tomorrow and then 3 days off. I am back to work on Tuesday and then off to London to see the Cure at the 02 arena.....yippee!!!! Robert Smith...here I come. This was mychristmas present from my daughter and as I have never seen the Cure live...I am so looking forward to it!!!
Next Friday I am at Gateshead to speak at the Mick Knighton fund Action Mesothelioma event. I am looking forward to that and am getting prepared for it. I am also looking forward to having some girly time with my daughter which will be great.
I have been trying something that is so out of my realms it may not happen. I have been trying to contact Jade Goody about the treatment as she could benefit from it. I have run out of options as the places I have contacted don't seem interested. It is such a shame...a young women with 2 little boys who is in the posistion I was in last year. I hope some one does find something to help her as I wouldn't wish the nightmare on my worst enemy.

Tuesday, 17 February 2009

Back to work tomorrow

I have enjoyed chilling out on my 3 days off. Kieran and I went to see his friend today. We had a lovely time.
The Mesothelioma petition is going well. It has 890 signatures now.
Steph is back to Germany and will be having her 2nd treatment on 24th February and I am so hoping she gets a good result.
As soon as I know anything, I will add it.

Action Mesothelioma Day is coming up, unfortunately, there is nothing in Plymouth this year as Jackie Lowe has been unwell.
I am sure she won't mind me telling you, she is expecting a little bundle which has given her morning sickness.

Congratulations Jackie and family from all at Meso and me!!!

Kieran is with his dad until Friday and Siobhan and I will be preparing to see the Cure at the 02 next week.... woo hoo!!!
Then it is off to Gateshead for the AMD meeting where I am talking about my experiences.
We are going to have a girly weekend as we have extended it until 1st March.

Sunday, 15 February 2009

3 days off!!!

Valentines was very quiet. Mr S said we would have gone out to eat if he was on his way to New York. I hope he has a wonderful time. We will catch up when he gets back.
I am writing my talk for AMD at Gateshead. I am quite looking forward to meeting all the wonderful people who work so hard t make this day a celebration and remembrance of all those with the disease. It also brings awareness in the media, highlighting the disease.
I am going to visit my friend, Helen today. I haven't seen her for about a week. The boys enjoy seeing each other. It is half term week as well..... here come the tours!!
Which will it be...train or bus???

Friday, 13 February 2009

Lovely surprise this evening.

I have a little friend with me this evening, Cloth ears, he is my friends teddy and she has had him since she was a baby. She was feeling a bit lonely and with valentines day arriving tomorrow, she was sure she wouldn't get a valentine. I offered to take Cloth ears shopping and he has come home with me. My friend made sure he was wrapped up warm in his little coat. When I got home, Mr S arrived with a lovely bouquet of flowers. It was a lovely surprise and was a very sweet thing to do. He is off to New York next week and has asked if we can meet up again. Of course I said yes as he is good company. I hope he has a lovely time.

My last day of rotation is tomorrow and it is half term next week. Kieran and I will probably do a train or bus tour.


Thursday, 12 February 2009

Tired today

I have finished my first day of rotation and I am shattered. It may be to do with the Mistletoe as I took it last night. I will see how things go tomorrow, hopefully the tiredness will go.
James has been over to finish off the decorating and I am getting sorted to put the house up for sale.
Rich is out of work again and will have to sign on now and look for a job as he needs to be supporting himself.
Kieran is on half term next week and will spend some of that with his dad.
Tomorrow Mr S is coming over for coffee after I finish work. He is off to New York. I hope he has a good time. I couldn't arrange the work/family situation to go which is a shame.
I am sure there will be other opportunity's.

Wednesday, 11 February 2009

Mistletoe tonight

I did my 40mg of Mistletoe tonight. I need to call Park Attwood next week to update Dr Maria about what has happened so far.
I am back to work tomorrow and have to wait for occupational health to confirm that I can go back onto my 12 hour shift as I have been doing 10 hours throughout the treatment.

Rich has given up the job he had at my request and after deciding for himself that it was just stupid going to work and not knowing where he would end up.
He will be looking for something else very soon...I hope!

There was a piece in the paper yesterday about the fund raising done in Orange for Steph.
It was a little late but never the less it is publicity for her.
http://www.thisisplymouth.co.uk/news/Charity-events-cancer-patient/article-651820-detail/article.html

Although the article says January 28th, it was published in yesterdays paper.
The picture is great, I have ordered one for work.

I went out to see my friend, Carolyn today and she seems a lot better in herself. She is going to come to St Ives with us in May which will be wonderful.
She deserves a break after all she has been through.

Tuesday, 10 February 2009

Richard's latest job

Well what can I say. My second born went out of the house at around 11:00am and it is now 11:19pm and he isn't home yet. He has been in training with Sky the tv package company and he has ended up in Exeter!!
I rang him at 9:00pm and he was waiting in the bus/train station to get home.
I have told hm to give it up as it is ridiculous to expect someone to do this. He said he wasn't told he was gong to Exeter for training. What an awful company, I think it is all about pressure selling and also a lot of brain washing to sell the product. He has been telling me about it and it is like pyramid sales which I have always avoided.
He has been quite keen to do the job, telling me about how much he could earn in 2 years.
It isn't for him and I will be having a good talk to him when he gets home.

Another lovely day

I chilled out for quite a while this morning before going out to do the shopping. I then went into town to meet Mr S who had asked me about going to New York with him. I am not able to go as it would mean organising everything with work and the family. The biggest thing would be me flitting off to NY with someone the children don't know. After last weeks issues when I got back late, I don't think it would be possible. It was good to see him though and we had a coffee and a chat before I had to leave to meet Kieran from his school bus.
Rich has been doing ok with his new job. I am not sure how long this one will last as it is marketing and selling.
Tomorrow I am going to See my friend, Carolyn who has been quite poorly lately.
She has been a great support to me through my ordeal and now it is my turn to support her.
She is a wonderful friend and I hope that she doesn't have to go through what I have been through, She doesn't deserve that.

House valued yesterday

Yesterday was quite a good day. I got the house valued and got the price I had in mind which is good. I have to get my HIP pack done now and then the house will be up for sale. It will be such a shame to move from here as a lot has happened, but life goes on and this year is going to be the start of a new life.
i will be half a century old in July and I am pleased to be here to celebrate it with all the people who care about me.

I saw Steph yesterday and she is looking very well. She says she hasn't felt so well for a long time. Ali has noticed a difference in her as well. I took out the money raised by my colleagues in Orange which was £682 and the money raised by Charlotte for her sponsored silence which was around £100. It was good to see her and that she is looking so well. She is back to Germany in February for her 2nd treatment and she will hopefully be hearing that her tumours are under control.

I heard from Chris, another meso mate, who went out for his second treatment. He said the first had gone really well and his tumour was shrinking. He also said Prof Vogl thinks he may only need 4 treatments. That is such good news, I still feel saddened that Nicky and a lot of other lovely people won't benefit from this. All I can do is spur on with my campaign in their honour.

I went out to eat with my friend, Tina last night. We had a lovely time and popped in to see Julie afterwards as we are arranging our trip to St Ives again. We went last year just as I was starting the Mistletoe. I wasn't quite on top but this time I intend to make up for that.

I am out to lunch with Mr S today and then off to do the usual shopping for the family.
The weather seems better today, it rained so much yesterday, still no snow.

Saturday, 7 February 2009

A lot better today!!

Work was easier today, no hang over to deal with !!!

I will work tomorrow and then have 3 days off. My dear friend, Carolyn is in hospital at the moment and I hope all goes well fer her.
It is so cold here today, we still haven't had a big snow fall. A few miles up the road, the police had to take people to a village hall and they left their cars because the snow was so bad. It has been really sheltered her, saying that, it will probably happen over night....woo hoo snowman!!!

Kieran has been with his dad over the weekend and will be back tomorrow night. Rich is out with his friends so it is Siobhan and I at home with the kittens.


Feeling better today.

Yesterday was not good. I went out with Mr S the night before. I known him for over 20 years and it was a lovely evening, we went for a curry and then on to the jazz club where we saw Nick the fish playing. Nick was brilliant and I am thinking of asking him to perform at my birthday party.
Unfortunately, I had too much wobbly juice and felt terrible yesterday. I didn't get home until around 1:45am and came home to 3 very worried children as I said I wouldn't be late.
Yesterday was difficult, my own fault I know.
I didn't get the job I went for but I am not to fussed about that as it was a small change to what I am doing now.
I am working today and tomorrow.
Monday I am having a valuation on the house. I went to look at a house on Thursday but it needed too much work done on it and as we would be living in it, it wouldn't be good.

Wednesday, 4 February 2009

Professor vogl and Chemoembolization

Wendi Lewis has been busy. She has contacted Professor Vogl and asked him some very good questions about chemoembolizaton and the trial he is doing at the moment.
Wendi has a wonderful website called My Meso which is very informative.

I have added the transcript below.

Q: Explain the basic procedure of chemoembolization / locoregional therapy in the treatment of cancer. How does it work?

A: The basic principle of chemoembolization/locoregional therapy is to achieve a transarterial approach to the tumorous lesion. In the treatment of mesothelioma we have to find the direct supply to the cancer. Then the chemoembolization material can be selectively inserted directly to the lesion. A concentration of cytotoxic drugs of up to 20 times higher can be achieved compared to systemic chemotherapy with reduced adverse events. By cutting off the vascular supply, chemotherapy can be retained in the affected region for several weeks.

Q: How did you learn that this treatment is effective for mesothelioma?

A: During treatment of patients with primary and secondary lung cancer we learned that locoregional therapies are effective for the treatment of mesothelioma.

Q: When did this clinical trial begin? (or how long has it been going on?)

A: The clinical trial started three years ago and will be continued for the next two years.
Q: What are the goals of the clinical trial for this treatment?

A: The goals of the clinical trial are to improve local tumor control, to reduce clinical symptoms like breathing problems and pain, and to increase survival.

Q: How many people with mesothelioma are you currently treating in this clinical trial?

A: Currently we treat 300 to 400 patients with primary and secondary lung cancer per year, and we treat about 20 patients with mesotheliomas.

Q: What are the general / overall results you are seeing in the trials?

A: Clinical symptoms and clinical status of the patients have improved. Local tumor control has improved as well.

Q: What is involved in evaluating a person to see if they are a good candidate for this type of treatment? (What is a good candidate?)

A: Normally we need the following material from the patient before treatment: histology of the cancer, therapy protocols so far obtained, images showing the extension of the tumor. A patient with a localized pleuromesothelioma in one half of the chest is a good candidate.

Q: Explain the procedure for someone receiving this treatment – what happens during a typical treatment visit? How long does it take?

A: After local anesthesia, the femoral vein, which is located in the inguinal region, is punctured. Then a small femoral sheath is usually inserted in the vein through which different catheters can be inserted. After displaying the caval vein, a catheter is pushed forward into the tumor feeding vessels after trespassing the pulmonary arteries. For preventing pain analgetic drugs are administered. Then the chemoembolization as well as the embolizing material are applied. Towards the end of the procedure, the catheters and the sheath system are removed and a compression bandage is applied in order to prevent complications in the inguinal region such as hematoma. After surveillance of 6 to 24 hours, in which complications might be detected and treated, the patient will be discharged. Up to 24 hours after the procedure a CT scan is performed in order to evaluate response to treatment or complications.

Q: How often / frequently does a person receive treatment?

A: The patient normally receives the treatment three up to four times in a 1-month interval.

Q: What are typical side effects of treatment?

A: The typical side effects of the treatment are very low. Normally the patient suffers from fatigue. Nausea and an increasing shortness of breathing are also rarely observed.
Q: How would someone apply to participate in this clinical trial? (Is it still open to receive new patients?)

A: If you send me material (medical reports, MR images, CT scans) I can check it and provide a treatment plan thereafter.

If you are interested in learning more about chemoembolization, or being evaluated for possible inclusion in the clinical trial, you can contact Dr. Vogl here:

Prof. Dr. Th. J. Vogl
Department of Diagnostic and Interventional RadiologyUniversity Hospital
Theodor-Stern-Kai 7
D-60596
Frankfurt
Email: T.Vogl@em.uni-frankfurt.de

Contact telephone number: 0049-69-6301-7277

Tuesday, 3 February 2009

Let it snow, let it snow, let it snow!!!


I went out to lunch today with a friend I haven't seen in a long time. He took me to lunch on Dartmoor in Plymouth. There hasn't been a lot of snow where I live and the moors always has the worst of the weather.

It was beautiful, we saw many snowmen along the route and 1 frog snowman. Some people are so creative!

We went for the Plume of Feathers for lunch and spent the time talking about the days gone by.

Sound like my parents....oh dear!!!!

He was really sweet and bought me lunch. I took a couple of photos of the snow and I think we would have had a great time with snowball fights and building snowmen but I had to get back for Kieran.

I had a lovely lunch and will be seeing my friend again on Thursday.
I will be taking my mistletoe tonight and hope it doesn't give me the flu symptoms again tomorrow as I have a job interview at 10 in the morning.
I am not going to bank on getting and if I do, it will be a bonus.

My new hair !



I have been doing well with my new years resolution. It is to grow my hair back and see what it looks like. I have got so used to my wigs and I love them.

I have a picture (the one above) of what my hair was like in January 2008 and I can see the grey hair at the sides. It was also very thin at the sides due to Alopecia that I have had for 5 years now.

The picture above is the picture of my hair now. I have dyed it but the most impressive thing I have found is that I have been taking the mistletoe since April last year, and it has given me back the colour in my hair. With having the chemo as well it has been more impressive as my hair hasn't fallen out, it has grown back! I never do anything in a straight forward way !! : )
The 2 pictures above that are before I dyed it and it can be clearly seen how much colour has come back since the first picture.
I am not ready to go out in the big wide world with my new Mr Whippy hair. I am going to let it grow a lttle more before i do that.

I am out to lunch today, weather permitting with a friend I haven't seen for 25 years.
It has been snowing here but has not settled. It is quite mild here.

Monday, 2 February 2009

achy day yesterday

I took my mistletoe on Saturday night and Sunday I was aching all day. It is very much like the aching with flu and a little shaky due to the temperature change.
I know when I have the symptoms that the mistletoe is doing something.
Today I have been absolutely fine and the flu symptoms have gone.
Today has been a good day as I have been a little low since Nicky passed away and did wonder if I was doing the right thing in recommending the treatment to other people when it has worked for me and not knowing if they will get the same response.

I had a blast from the past yesterday, a friend I had not seen for 25 years came to the house and spoke to my son, Richard. Rich gave him my number and he called last night and all being well tomorrow, will be going out to lunch.
It has been snowing all over the country but not in Devon. It has been forecast for tomorrow and Kieran may be home, I will wait and see what happens. If he is home, I predict snowball fights and building snow men....woo hoo : )

I have a job interview on Wednesday for a job in a different department in Orange. I will do my best at the interview and know I can do the job but it is whether my absence because of my treatment will go against me.
If I don't get it, I will wait until something else comes up.