Friday, 31 December 2010

David.

It is with great sadness that I tell you all that Julie lost her lovely dad, David to mesothelioma today.

This is the most difficult time of year to lose someone, it has to be the worst day as those around you will be cheering in and welcoming the new year and Julie's family will be thinking of life without their hero.
There will be no brighter star than David's tonight, not even the fireworks will out shine it.

Condolences and love sent to Julie and family.
It was a pleasure and an honour to have met such a wonderful warrior x x x

Ramblings yesterday.

I apologise to anyone who read my blog yesterday and was offended by it. It will stay on the blog as this is all part of the journey.
I will try and move on today. Siobhan came home yesterday. She is struggling with her illness and I feel so helpless. I want to help her so much but there is nothing I can do as, once again, the services in this country suck. She will have to wait months and months before she sees anyone.

Can I take this oppurtunity to wish all readers and supporters of mesothelioma and me a very happy new year, I hope 2011 will be better than 2010.

☻/˚ •。 • ˚ ˚ ˛ ˚ ˛★ 。 .˛° 。 ° 。 ˚ • ★ ˚ .˛ 。
/▌˛˚ ˛ •˚ ˚ Have a SPARKLING NEW YEAR! ˚ 。 ★
/ \ ˚. ★ ˛ ˚ • 。˚ ˚。 ˛˚ • 。˚ ˚ ★˛ ˚ 。. • ˚ 。




Thursday, 30 December 2010

This is from the heart!


I am feeling so down at the moment, 2010 has been a miserable year for many of us living with mesothelioma. Losing people with the same disease makes you realise just how this horrid thing works. There haven't been many positive stories for a bit. So many wonderful people ripped away from families, I don't have to worry about that bit, excluding the children, my family don't give a toss. They are only interested in the money I got which has gone... they didn't know how much it was as it was none of their business. It wasn't as much as they thought it was but i was lucky to have it, I have been very fortunate, with my having mesothelioma I was able to pay for my treatment. Even my family, excluding the children, would have denied me that.
I still have to fight this disease, and sometimes I feel I am alone, without a family, ignoring all their nasty comments on top of it all. Without my friends I would be completely alone.
I only hope none of the family have to go through this horror, I wouldn't wish it on anyone. Getting awful comments and snide remarks makes fighting this disease even harder.
I am returning to Germany next week to see Prof Vogl, I will be pleased to see him but wish it was under different circumstances. Rita has been a fantastic friend. I feel so uncomfortable taking help when I am so used to doing things by myself, I suppose having support is alien to me and when some offers their hand to help me up, I find it very hard to accept but know I have to for the children's sake.
I have accepted help from Rita and know there is nothing I can do to repay her. She has her own issues, she lost her lovely Peter to mesothelioma but still has it in her heart to help someone else.

So back to my family, excluding the children......I have replaced them with some of the most wonderful people in the world, my friends. I don't need you, any of you, I have my family around me, the only ones who matter, the important ones and the gaps have been filled with friends, better people than the bitter, spiteful people you are who consider me dead already....yes I will never forget that one.

Here's to 2011, I hope it is the year Theo decides that Germany is the place to be, it is good to have you home for Christmas Theo, but now you must return to your own place, meet some others who visit Germany and make sure they stay with you rather than letting them go back with their host.

Ramblings today..... this is how I feel and it is what my blog is about, it is for my children and for people affected by mesothelioma or any cancer .... it is a roller coaster, like all cancers.


Wednesday, 29 December 2010

Bernard

In 2008 I had a phone call from a lovely man, Bernard. He was an absolute pleasure to talk to.

He would call a few times in the year and we would swap notes on how well we were both doing.
Sadly Bernard passed away on 27th December. He was a very positive man, I never heard him grumble about having mesothelioma. I will miss his phone calls.
Love and condolences are sent to Bernard's family who will enter 2011 without their warrior.

Jennifer.

Last night candles were lit across the world in memory of all those lost to mesothelioma.
This one is especially for Jennifer x x

It is with great sadness that I add Jennifer to the list of warriors who have left their family.
Such a great sadness hangs over anyone who loses someone and more-so at Christmas time.
I met Jennifer this year and had a long chat with her about our illness and families. Her daughter had brought her wedding forward so Jennifer could see her beautiful daughter get married.
That must be a wonderful memory for the whole family.
Condolences are sent to Jennifer's family. Another beautiful angel shining bright in the night sky. x x

Saturday, 25 December 2010

Merry Christmas day.

Our christmas table.
My beautiful necklace from Siobhan.
Kieran with his Christmas present.

It has been a fabulous and wonderful day with the children.
I don't need anymore than them to make my Christmas. It wasn't how it usually is as the gifts weren't as much as I wanted to give them but we were all very happy with what we got.
I got Kieran a PSPgo which he had wanted and got Siobhan and Richard an iPhone each.
Kieran;s voice is breaking, he has a bit of a sore throat at the moment. My little boy is turning onto a man : (
He went with his dad after lunch and will spend they day there, coming home tomorrow.
Siobhan gave me the most beautiful necklace, it is the best in the world, it is a dragonfly and is stunning.
We will soon be into another year, I hope this one is going to be wonderful. It will start with a trip to Germany for a treatment with the Prof. 23 months of being stable is brilliant and my meso is no where near the stage it was when I started the treatment with the Prof.
A thought for all those with out their loved ones today. It is heart breaking. I will light a candle to remember all those heroes who have stepped into another room x x x

Friday, 24 December 2010

Merry Christmas x x

All at Meso and me want to wish everyone a very merry Christmas, some special people cannot be with us but will be in our hearts x x

Thursday, 23 December 2010

Plymouth Mesothelioma Support Group.

My icy street.
The specialist lung nurses and I at the support meeting.
One of the wonderful carers brought in a Christmas cake, One of the specialist nurses got the honour of cutting the cake.

Yesterday was still very cold, ice everywhere so my trip to the support meeting was in jeopardy.
I decided that trying to get my little car out of the garage and struggling with the ice was going to be too much. I called a taxi to take me to Derriford hospital. The roads were fine once we left my street. The meeting was small as a lot of people had difficulty getting in and the car park was overflowing.
We discussed diet with the oncology dietician and got a few helpful tips from her and each other.
The next meeting will be in January, by then I would have been to see to Prof for my first treatment since December 2008.
The specialist nurse said there is a Dr in Derriford who is going to do a survey of patients who are seeing Prof Vogl. The Dr also wants to know more about the treatment and I got the feeling that he/she was very keen on this work.

After the meeting I went in to the city centre on a bus to get the last bits of Christmas presents.
I haven't been on a bus since I passed my test 6 years ago. The driver was very confident with the roads!
I have to say that the transport services in Plymouth have been wonderful how they have coped with the bad weather and how they have got passengers to their destinations the best way they can.

Rich and I went shopping today, we went to a large Sainsbury's store, Again we had a taxi.
After we had finished the shopping, I called a cab and was told the wait would be 20-25 minutes. A cab eventually arrived, I asked the driver if it was in the name of Brewer, no it wasn't, so we waited, waited and waited some more.
I called back and was told a driver was on the way, he would be 10 minutes as some kind soul had stolen the cab we should have had!
We waited and waited some more in the freezing cold air. Again I rang and asked where the cab driver was....he had gone home!!!
Another one was on the way, the lady on the phone couldn't apologise enough, Rich and I had been waiting for over an hour. Eventually he turned up and again he apologised to us for the mess.
Great service, even if it was an hour late!!

Tuesday, 21 December 2010

Hello from the freezing cold south!!!


Well...we have been carless for 4 days now and not sure when she will be out of her garage.
Tomorrow the support meeting is going on in Derriford hospital, Plymouth. I hope I can get there.
They really do make me feel good. Having warriors to talk to is always wonderful.
I hope the weather sorts itself out very soon. I have a couple of bits to do for the children's presents but if it isn't done, i will have to sort it out after Christmas.
I am sure they won't mind. My friend was going to come out but said she wouldn't if the road were bad, they are obviously still very bad in her area too.

Monday, 20 December 2010

Debbie's funeral.

I am so gutted today that I can not get out to say farewell to Debbie. My street is totally iced up, the children managed to get into town and get some shopping, they had to walk to a taxi and then walk back. poor things just about managed.

I hope Debbie had a wonderful send off, no one should be celebrated at 44 years of age, especially when they have a disease through no fault of their own.
Love to all her family and friends who will be missing their angel.

Debbie was a quiet warrior, she marched on her own. She was an admirable lady. When doing a newspaper article, she was crucified by many who do not understand the devastation of mesothelioma. All they focused on was the small payment she got, how cruel they were.
I hope they realise how wrong they were to attack someone the way they did.
What Debbie did was to highlight the dangers of asbestos and what can happen. Well done Debbie, sorry for the ignorance of some people who are lucky enough not to have this time bomb inside of them.
Look after your family, they need you honey, bless you and may your star shine brightly every night for all to see. x x

Sunday, 19 December 2010

Happy Birthday Kieran x x


Happy birthday Kieran x x x

It is my baby boys birthday today, he is 14 years old!!! Where does the time go?
I can remember getting my diagnosis and thinking I wouldn't see him go to senior school and now, 2 years later, here we are celebrating his 14th birthday. I got him a mobile phone as he is growing so fast and the one he had was quite old and basic.
He loved it, said it was his best present.
We had fun with just dance 2 on the wii and had a small party. We were going out to eat but the roads are so bad, very icy, it isn't worth trying.
Rich and Kieran had fun with the snow, got some great pictures of them.

We can go out another time. What is important is that he has had a wonderful day.

TOF op.

Thursday afternoon I got a train to Taunton. I went on my own as there was no point in anyone coming with me as they would have to travel back.
The nurses at the hospital were wonderful, very welcoming.
Had an ECG, X-ray and bloods done to check I was well enough for the op.
The room I was in was quite echoey and as I tried to get to sleep that night, the clock loudly let me know about every second that was going by. I did manage to get some sleep and was woken at 6:30am by the nurse who came in to take my water away as I was now nil by mouth, I had enough to take my tablets.

Dr TOF had already been the night before and explained everything he was going to do.
I would be paralysed for a few seconds to keep the oesophagus still as he clipped it. We went through every eventuality and he assured me that he would look after me. I didn't feel nervous at all, I felt that my dad was with me holding my hand.
After I came round, my throat was very sore. Later in the day Dr TOF came in and said everything went very well. He was very proud of himself and told me I was a delightful patient.
I told him I was so pleased that he believed in me and that something could be done about the TOF.
He is going to be adding it to medical journals and will no doubt be invited to talk about the procedure.
I was not sure if I would be going home on the Friday, As I had no one with me, it was decided I stay another night.
The nurse very kindly removed the noisy clock for me and I got a good nights sleep.
I woke up Saturday morning and looked out the hospital window to see snow everywhere.
I was so worried I wouldn't get home.
It would be Kieran's birthday the next day and I wanted to be home for him. The nurses assured me that if it was too bad and I couldn't travel, I could stay in the room again.
I managed to get a taxi to Taunton station and then onto Plymouth on the train and a taxi to as close to home as possible. I had a 3 minute walk to get home, I rang Rich and he met me and took my bag.....phew!!!
What and eventful couple of days. I am not coughing when I drink and at the moment, all is good. I have to have a soft diet for a few more days as this is all a trila and Dr TOF and I don't know what will happen. I hope this is the end of the TOF.

Bringing things up to date.


Sorry I haven't been on here a lot over the last few days, a lot has happened and i will get it all put on here in due course.

First of all I have to say happy birthday to my lovely dad who would have been 72 on 17th December.
I miss him so much, I didn't get to the cemetery as I was in Taunton getting the TOF fixed.
I called Siobhan later that day to let her know all was well and she said she had something to tell me. She had gone out on Dartmoor as the snow was better out there and was walking along when she came across a joke book laying in the snow, it was a Tommy Cooper joke book and she remembered me saying how my dad loved Tommy, Monty Python, Spike Milligan and many others. She felt it was a message, I like to think so too, I think my dad was telling her to keep smiling as she has been down lately.

The TOF tale will be in another post.



Wednesday, 15 December 2010

Taunton tomorrow.

Will this be it, will the TOF get sorted out once and for all?
I am feeling a little low at the moment, whether it is the latest diagnosis, the worry about the op on Friday or my lovely dad's birthday? I feel like I want to cry and not stop.
What ever it is, I want this feeling to lift. Every time I have a cough, pain or twinge my mind works overtime, is this the beginning of the end?
It has been a sad time over the past year with many wonderful friends not here with their families, the latest being Debbie. Sometimes I wonder why I am still here.
I want to be here so much for my family, my children need me and I love them so much and don't want to leave them.
I am looking forward to seeing the Prof in January. He is a wonderful man who has given me the greatest gift anyone could give to another.
I will support him all the way with getting the treatment in the UK.
Not sure what will happen after this treatment as I will need it funded.
If it isn't, I don't know what I will do. That is something I will think about if my funding is refused again.
The PCT have to see that the treatment has benefitted me.
I am going to get this TOF op out of the way and then concentrate on Christmas with my children.

Monday, 13 December 2010

Debbie x x



Debbie, 44 years old, had the unfortunate chance of being with her gradfather when he had asbestos on his clothes. 44 years old and her life is over. So sad, such a lovely lady.
My heart goes out to her family and friends, especially my friend, Chrissy, who was a great support to Debbie.
Love and condolences are sent to her family at this very difficult time.
May your beautiful star shine bright every evening. Wrap your angel arms around all who you loved and protect them through this difficult journey without you x x

Sunday, 12 December 2010

Weekend with Rita.

Ron and I
Dawn and I
Rita and I
Rita's 4th night cap...her secret recipe!!

I met Rita and Peter through Rita's granddaughter and her boyfriend Andy. I work with Andy in Orange. He shaved his wonderful mohawk off last year to raise funds for Stephanie Chouette.
Rita's husband, Peter had mesothelioma. He passed away this year. Rita invited me up to be with her for the weekend and I have been thoroughly spoilt.
She is such a wonderful lady.
I also met up with Ron who has got 2 treatments funded by his Primary Care Trust (PCT)
It was great to meet him, and Dawn who had been so instrumental in helping Ron with his case.
Rita and I had a fabulous time. We talked about many things. A lot of it about Peter which was lovely as I could get to know the wonderful person he was through his angel wife, Rita.
We were all prepared to go to bed at 11pm on Friday night, that turned into 2am Saturday morning. After 4 night caps, we decided to call it a night...not before Rita made her speciality night cap!!!!
It would blow my hat off if I was wearing one!
Rita showed me my room where i would sleep and showed me a bathroom that only I would use. She has a beautiful little bungalow.
Later on Saturday we went to meet Ron and Dawn.
We had a long chat about how things were and swapped notes about twinges, aches and pains....as you do!
I was sad to go home but know I will definitely be seeing Rita again. she has very kindly said she would accompany me to Germany, She is a little treasure.

Kieran's Christmas service.



I went to Kieran's school Christmas service on Friday. I always love this time of year, it is when I reach my goal.
When I was diagnosed in 2006, the December of that year was very hard. I can remember tears rolling down my face as I listened to the children singign Christmas songs and was so upset that I might be leaving my darling children. 4 years later and I am enjoying hearing and seeing the children produce their hard work in front of their parents. So many very proud faces looking on, none more proud than I am.

Demonstration in London




Well done to all those who turned out for the Jeffrey mine demonstration in London last week. I wasn't able to attend as I had not been well but supported them in other ways by trying to bring some awareness to the sadness asbestos and mesothelioma has on patients and their families.
Terry very kindly sent some pictures of the day. There was a good turn out which was drowned out by the student demonstration but hopefully they will have got there message across.

Thursday, 9 December 2010

Another trip to Frankfurt.

I have been in touch with Prof Vogl today. I will be going back to Frankfurt in January. I have to hope that anymore sessions the Primary Care Trust (PCT) will fund.
I am so nervous about is as I will be travelling on my own.
I have a friend who is a travel agent and am hoping she can get me a good deal.
I will be seeing my MP tomorrow and hope she can pursuade this PCT to fund the treatment otherwise it I won't be having any treatment.
I hope that somehow something will come up.

Protest in London.

Today there is a protest in London about the Canadian government funding a $58 million loan to re-open the Jeffrey asbestos mine in Quebec.
I would love to have gone but as I haven't been on top form, I don't think a long train journey and being out in the cold would do me any good.
I am in full support of this protest.
It is worl wide, USA, Australia, Asia, India all will be making their voices heard. Good luck to you all and i hope Canada takes notice, Asbestos is murder!!!

Wednesday, 8 December 2010

Lot better today.

I took some pain killer slast night and this morning the pain seems to have diminished a lot to what it was.
I will be contacting the Professor as My GP contacted Dr Meso and he has said he told me that he wouldn't be doing radio therapy as it would make me too ill. It would be used as a last resort.
My MP will be visiting me on Friday so I will be speaking to her about getting Primary Care Trust (PCT) funding.
I have recieved a lettter from them which, I feel, has a positive feel.

John Lennon

I cannot believe that it has been 30 years since the wonderful John Lennon was shot by Mark chapman. It was such a painful day for the whole world. I still love his music and do wonder what beautiful songs the world has missed out on because of one mans actions on 8th December 1980, A few crazed moments in time and a life is over.


Tuesday, 7 December 2010

Off to the GP.


It is a frosty cold morning in Plymouth, The roads aren't too bad. I did have plans for today but they have been erased by having to see the GP again.
I have now got some painkillers and my GP has called Dr Meso to find out what is happening re-treatment.
My facebook warrior friends have been wonderful. They are always there for support, What would I do without them.
Our warrior secret santa is going well, I think it has lifted a lot of people out of their sadness. The parcels are travelling across the world, It is wonderful.

Monday, 6 December 2010

So painful today.

I haven't done much today, picked Rich up this afternoon as he had started a job this morning and it is so cold. Felt sorry for him having to walk back home, it's a good 2-3 miles. He walked there this morning and picking him up would help as he must be so tired.

I picked Kieran up at about 7 pm this evening, he had tea at his dad's. The temperature has dropped this evening, the roads were quite frosty. My little car is now tucked up in her garage away from the frost.

My left side has been really painful today, I am not so shivery and pained as I was yesterday.
If it carries on, I will be going to the Dr's as the children are getting concerned and I don't want them worrying. I am not sure if Theo is playing up as there has been a little progression. Still no word from my oncologist, I just want him to tell me if he is going to give me any treatment so I can organise the next chapter.

Cold and frosty morning.

Rich was up at 4:00am this morning. He had a call yesterday afternoon to start a job. He walked to where he needed to be as it was so early and there is no transport. I gave him the money for a cab but he said he would rather walk.
It is very cold and frosty this morning but sunny, lovely morning.
I took co-codomal last night as the pains I had were so bad. I think I have a flu, I haven'y had any sneezing or runny nose, only aches.. I felt like a 90 year old, although some 90 year olds are fitter than I am!!
Kieran has gone to school, he did very well with his bus yesterday and it has made him aware of how alone he would be on a bus and he can see why I want him to take his time with learning to be independent on a bus. He has said he only wants to do travel training once a week which I think is wise. He is only doing one journey this week which, I think, is enough.

Sunday, 5 December 2010

Well done Kieran x


Kieran has done it, his first bus ride on his own. It is a start but I think he still has a long way to go.
I am so proud of him for doing it.

I have been feeling so achy today, not sure why, I don't think it is the flu as I haven't had any symptoms. My shoulders and back are aching both sides, I don't think it is Theo. It isn't in that area.
Hopefully a little rest and staying in the warm will help.

On a sadder note, A lady who I met a few years ago has passed away. So shocking as she isn't even 50....She was exposed through her grandfathers work clothes. love to her family and friends at this difficult time. What a terrible time to lose someone and someone so young with everything to live for.

Saturday, 4 December 2010

Kieran's first bus trip on his own.

I bought myself a new hat for winter, we haven't had any snow here, just rain.
Drinking chocolate in Thornton's, where else!!

Kieran's dad has moved house and now lives 5 minutes away. It is a short bus ride. Rich has walked him to the bus stop and will see him onto the bus , his dad is waiting the other end.... so nerve wracking. My baby is growing up!
It took him a few pushes to get ready to go. When his dad called to say he was home and waiting for him, he went upstairs and started to play his game again. He had no thought to get things ready to go... so a few shouts to hurry up got him moving. He think he is feeling very grown up today. I am waiting for a call from his dad to say he has arrived.

I went in town with my friend yesterday. We had a great time. I got my secret santa gifts for the warriors, we have decided to swap gift, people from USA and Australia are also involved. It is so exciting. Kieran is involved in this one, I posted our gifts this morning. I hope who ever gets them, enjoys them x.

Thursday, 2 December 2010

Op Cancelled.

I have called Dr TOF's secretary 3 times this morning, she is waiting to hear back from endoscopy department and they are waiting to hear from the rep if the clip has arrived..... no answer yet, it is 12:08pm and I need to leave to get the train at 12:55pm.

I have said I would rather cancel it. I will be having it done now, hopefully, on 17th December, this is my dads birthday. Hopefully he will be beside me as I go through it.
I am glad it is cancelled as although the little bit of snow we had had disappeared, if it did get bad, the children are on there own and I didn't want to be stranded in Taunton.

Snow!!



Well, if you can call it snow, we have a light dusting this morning.
I am not sure if I am going to Taunton. I don't want to get stuck there and leave the children. Sure they will be fine but would rather be home with them.
I will find out today if the rep with the clip can make it to the south west. I will know by 12:00pm and train is due at 12:55..... wonderful!
In my heart, I want to stay home as I don't want to be away if the snow turns bad.

Wednesday, 1 December 2010

Another cancelled op?

I have had a phone call today from Dr TOF's secretary. It seems the man who has the bear clip for the operation tomorrow is stuck up north in the snow and my clip may not arrive.
I will get a phone call tomorrow, just before I get the train, to tell me if it is going ahead.
Not worth shouting about as there is nothing that can be done and I know Dr TOF is cross too.

We have no snow in Plymouth so not sure if or when it will arrive.
It is very cold, freezing temperatures, the kitten is a little dubious about going out in the cold, that north wind always catches her.

Next week there is a protest at Trafalgar square to ask the Canadian government not to give $58 million to open an asbestos mine. I would like to go but will have to see how things go here. If I can arrange anything, I will be going.

I still haven't heard from my oncologist about radio therapy. I hope I hear soon.

Tuesday, 30 November 2010

Drs today.

I have had a pain in my shoulder fo the past couple of days. I hjave had the sniffles last week so it could be that it is the starts of another chest infection. I swa my Dr who gave me some antibiotics to sort it out. I hope it goes by Friday as I am supposed to have my TOF op.
The weather is very cold, there is no snow here at the moment, seems everywhere has it but it will happen at some point. I am hoping I am able to get to Taunton on Thursday, if not it will be cancelled again.
I sorted out some issues with Kieran's teacher about travel training.
Kieran suggested that he does more at Easter which I said would be ok, we would discuss it at Easter and see how things were.
Not sure what will happen. I want Kieran to be confident and I don't think throwing him in the deep end is the way to go.
I do feel pushed into a corner with this and frankly, at the moment, I don't need the stress.

Monday, 29 November 2010

Silly boys!!

Yesterday was an interesting day. Kieran stayed with his dad the weekend so I was looking forward to a peaceful day as Kieran would be back home soon.
I was sat at home snuggled up in the warm when in the afternoon I got a phone call from Kieran's dad.
He has just moved into his new flat and went to the shop to get some groceries. When he got back, Kieran opened the door for him, somehow they were both outside when....blam.... the door shut.
Uh on... Keys are inside, as is Kieran's back pack, lunch box and travel pass for the bus.
I went and picked them both up, took Kieran's dad to his old address as he was going to stay there over night. I popped in to see my friend Gina for a coffee and a chat. Then Kieran and I went home.... silly boys!!

This morning Kieran is getting the bus to school with his teacher. I am very concerned about this as I feel Kieran isn't ready for such a challenge.
He was looking forward to going on the bus this morning, when he does do this independently, he will have to be up at 7:30am every morning and have a 1 hour and 20 minute ride to school which isn't a good start to the day. I don't need anymore stress at the moment. Last night I couldn't sleep through worrying about him on the bus. I know i have to let go but this isn't the right time. He is only 13, so pleased he is enthusiastic about it though and will try him on some short rides as his dad only lives 5 minutes away now.

Sunday, 28 November 2010

Peter

It is with great sadness that I add Peter to the blog. He passed away yesterday afternoon with his lovely wife, Mary by his side.
Nothing can prepare anyone for the devistation mesothelioma and any any cancer leaves in its wake.
Love and support are sent to Mary as she continues her life without her soul mate.

May his angel arms comfort you Mary, as you have put your angel arms aroung Peter while he was so ill.
Todays blog is dedicated to Peter, Mary and their family.


Saturday, 27 November 2010

I hate mesothelioma!!!!

There have been a few pieces of good news from warriors this week, Mavis, Helen and Andrea's dad who have all had great results from their CT scans.

In contrast to this, a warrior is not doing well. Peter is in hospital and isn't well, his wife, Mary, is with him. I wish every warrior could have good news and it would never change. This is heart breaking.
Why can't this bloody disease leave them alone and at least let them have Christmas together.
It makes me so angry, love and positive thoughts are sent to Peter from all at meso and me and all the warriors, love and support to Mary.

Friday, 26 November 2010

Out to lunch with Siobhan and Rich.

A polar bear outside of the market in Plymouth.
The ice rink, a lovely sight at Christmas time.

I have had a lovely day with Siobhan and Rich. Rich bought us lunch and we had a wander around the city centre. I got a couple of little bits for my friend who has just had a baby.
We also saw the ice rink. It is always good to see it, it creates a winter wonderland atmosphere and lets eveyone know that Christmas is around the corner.
I have, hopefully, got the children's Christmas presents sorted out. I hope they like what I have got for them.
I am now booked to have the TOF op on Friday 3rd December in Taunton. I will be travelling up to Taunton on Thoursday evening and have the op on the Friday morning at 9:00am. This means I have had to cancel my appointment with my MP. I sent an email this morning detailing why I had to cancel and received one saying my MP would come to my house the Friday after, wonderful.
I am hoping to get her help fighting the PCT for funding of chemoembolisation in Germany.

Tuesday, 23 November 2010

Flat tyre : (


The picture is a charming one of Amber and Stork waking up after a sleep. Amber had started to yawn and it looks like she is smiling...I played about with it with some stickers on facebook and created a Christams one. Siobhan made the dragonfly, it is a mesothelioma sticker.

I had a knock on the door this morning from my neighbour. He told me my tyre was flat, I thanked him and went out to pump up the tyres. Looked like it was a slow puncture. I rang my garage man and took the car out to him. He twiddled with the valve on the tyre, tightened it up and said all would be fine as the valves expand with the cold weather. He also tightened up mu fan belt as it has been squeaking a little over the last few weeks.
Siobhan went to the Dr's, she has had a bad cough now for the last couple of weeks. All is ok, she has a virus which is slowly going.
She was very upset yesterday as she went into town to meet her boyfriend and some builders by some scaffolding shouted abusively at her to clear off. I have contacting the builders and am waiting for a call. No need for abuse when they can ask someone to move politely.


Sunday, 21 November 2010

Better today.

I had a quiet day yesterday. Not much happening apart from all the thought running through my mind about mesothelioma and the knock on effect it has with the children.
I went out with some friends last night. We had a good night, I wasn't drinking as I was driving.
Avis gave up her house for the evening and made a lovely meal for everyone. She got us all a bottle of banana beer, I brought mine home and will have it this evening.
Not sure what is happening today, the weather is dry but very cold. I might venture out to see my friend, Gina, who's birthday was yesterday.

Today is Stephanie Chouette's 1st anniversary of her passing. I cannot believe it has been a year since that lovely angel left.
Thoughts are with Ali, Sam and Steph's family as they get through today probably counting every minute to the time she left.
Wrap your angel arms around them all x x.

Saturday, 20 November 2010

Feeling Down today.

I am feeling so low today. I feel like I want to hide in a hole and cry. I think it is all the procedures that are on the horizon. TOF op next week, not knowing if I am having radio therapy or going to Germany. I hate this part of the disease. With Christmas on the horizon as well, it is all so emotional.
Juggling the family with treatments is a tough one too, making sure Keiran is ok, leaving him with Siobhan is fine as long as he doesn't kick off, leaving him with Rich is an absolute no.
When Kieran has one of his moments, everyone knows about it.
I am supposed to be going out with friends this evening, I really don't feel like it but I am going to force myself. I am not drinking a the mood I am in, I will spoil the evening.
I hate mesothelioma so much, not just for me but for everyone affected. It messes with peoples minds as well as their bodies. It isn't just mesothelioma that does it, it is all cancers and terminal illnesses.
I will be glad when this has passed, I will probably be ok tomorrow.

Friday, 19 November 2010

Doctors yesterday.

I went to the Dr's yesterday as my sick note has run out, seems to me everytime I think now is the right time to return to work, something else happens. I have the TOF op next week and am waiting to hear if I am having radio therapy for the progression of the mesothelioma.
I can't see me retuning until after Christmas now, I do miss my friends.

Devils Apple

I have been looking on the internet about trials and came across an old article I added a few years ago. Devils apple is a weed in Australia and has been compounded in to a drug and has shown success with mesothelioma.
I had a look to see if I could find any updates about it. I found a drug called Coramsine which is still being trialed.
I have added a link in the news feed on the blog and it is in the link below.

http://www.coramsine.org/




Wednesday, 17 November 2010

TOF op.

I had a call from Dr TOF's secretary today. The official TOF op will be done next Friday, 26th November. I will have to arrange the train for Siobhan and I, and her boyfriend as I don't want her on her own while I am in recovery.
Now I only have to hope that if I have to have radio therapy, it doesn't happen on the same day.
I am going to speak to my oncologist and see if it can wait till the week after, if I an able to have it.
It is going to be a busy time, fighting the PCT for funding if I need to see Prof Vogl again. I would choose his treatment every time over chemo in this country.

Tuesday, 16 November 2010

TOF op.

I had a call from Dr TOF's secretary yesterday afternoon. He has looked at the CT images I sent him and has seen that due to all the movement of the oesophagus when he did the endoscopy, as he thought, he had missed the TOF and it is still open.
I will be seeing him for a general anesthetic and op either this Friday or next Friday.
At least that will hopefully close it and no more choking on drinks. He will do another dilatation (Stretch the oesophagus) as I am still sticking on food, not as bad as it was though.
Once that is done, it is just the Meso to sort out.
I will be having radio therapy on the part of the lung that has progressed as long as it doesn't overlap the lymph node I had rt'd last year.
If it does overlap, it will be Germany again as the Prof has offered to sort it.
I will be asking for PCT funding again if radio therapy isn't the option as I think I have paid enough out to show them that I have had a great success with this treatment.
I will be seeing my MP on 3rd December and will bring it up with her. I think I will fight for it anyway as at some point I will need chemoembolisation again.

Monday, 15 November 2010

Mr Ali.

In October I met Faisal at the mesothelioma UK conference, his dad was fighting mesothelioma.

It is with great sadness that I report that another fine warrior, Mr Ali, passed away yesterday after a courageous battle with this awful disease.
Condolences are sent to the family at this devistating time from all at mesothelioma and me.

I hope they will continue to keep in touch, Mr Ali has a wonderful family who tried so much to help him find something that would impact on his disease. They should be very proud of what they have done for him.

Another bright star will join other twinkling heros looking down on us x x


Sunday, 14 November 2010

What a rant!


I have kept yesterdays rant on here as I think it helps me to see just how bad things get.
I opened a bottle of pink champagne yesterday to celebrate my 4 year anniversary of diagnosis.
I also had a cake which we had last night, we didn't put candles on it as it didn't seem appropriate.
Mesothelioma can make somome very bitter, it creates anger and frustration for the patient and the family.
I have some very special friends who I know I can call up and they will be there for me. Don't know where I would be without them.
Today I am going to start the fifth year with a positive note.... I won't give up and will fight for as long as it takes to get awareness for this disease and to educate people about the dangers of asbestos. It is the ignorance that angers me, the "it won't happen to me" scenario.

Onwards and upwards!!!!

Mesothelioma

Why did I have to get this? Why does my family not give a shit? My children are my world but my family are terrible. How am I going to make sure they are cared for when no one in my family wants to step up and say they will be there for them.
That is the most frightening part. I have done 4 years so far..the meso is progressing ... who will be there for my babies if anything happens to me... not my family... my friends are better than they are. I cannot rely on any one in my family. Even talking to the only sister I am in touch with has been an eye opener. I asked if her husband would have got exposed to asbestos... what would happen..."Nah he is ok... Well ''' I am not!!!! wake up...it could be and what happens then??
I am so angry with people being so nonsulant about asbestos, Why???

Saturday, 13 November 2010

Well done Maria!!


She did it, Maria did the skydive for her dad..well done girl.

She has raised over £600 so far, It's not to late to donate if you want to.

https://lunguk.tributefunds.com/fund/Bob+Wards+60th/showFund/


Fantastic achievement!!!

4 years!!


Today is the 4th anniversary of being told I have mesothelioma. I am adding the diary entry for that day.

"On 13th November 2006, my life changed. I had been diagnosed with Mesothelioma, a malignant tumour.

Mesothelioma is a cancer of the lungs and is associated with exposure to Asbestos.

I have never worked any where that had Asbestos exposure, the only link I have is that my father, who passed away on 26th August 2006, had worked for the MOD between 1963 to 1966. He was a lagger and worked closely with this deadly material. Unfortunatley, he didn't know how deadly it was.

I am now carrying a lethal enemy inside me that is going to result in an untimley death and leave my 3 beautiful children without a mother.

My father never knew this and I am grateful that he didn't, I don't think he would have coped with knowing 1 of his children was infected with this silent killer.

I now have to try and squeeze all my happiness into a small amount of time.

I intend to fight it and have been told this will be fruitless, but I am not prepared to lay down and die."

Good luck Maria.

Maria's dad, Bob, would have been 60 last week, he isn't with his family to celebrate as Mesothelioma took him from them far too soon.


Maria, Bob's daughter, is doing a sponsored skydive today, in memory of her dad.
It is not too late to sponsor her.

Copy and paste the link below.

https://lunguk.tributefunds.com/fund/Bob+Wards+60th/showFund/

Good luck Maria, I know you will do it. Bob will be so proud of you x

Friday, 12 November 2010

Melanie's dad

Condoleneces are sent to Melanie and family as they mourn the loss of her dad.
Mesothelioma is an awful disease, stealing people from their families.

Thoughts and love are sent to the family at the loss of their treasured warrior.

This is a terrible time of year to lose someone.
I hope they can get throught his difficult journey and know that there are a lot of people ready to comfort them and help the deal with it. x x


Wednesday, 10 November 2010

Thankyou Theo. x x

I have had the results of my scan and they are good. I have a small progression in the top left of the left lung. The rest is stable, Dr Meso is hoping to sort this out with radio therapy if he can. It is maybe overlapping the lymph I had radio therapy on last November. If it is overlapping, he won't do it. Then it will be Germany with PCT funding. It has been refused but I will apply again and will fight to get it.

Frederick, the TOF, is still very active. The clip completely missed the spot. That means there will be an op to close the TOF.

All in All it was a good result. : )


Imaging report.

Imaging report.

CT and upper abdomen.

History: Mesothelioma. Incidental tracheo-oesophageal fistula.

Comparison is made with the May 2010 scan.

The oesophageal stent has now been removed although there is a small metallic foreign body seen
immediatley adjacent to the trachea-oesophageal fistula lying within the oesophagus. The nature of this is unceratin.
It could peotentially represent a strut from the previous stent.

(it isn't a strut, it is a resolution clip from the TOF endoscopy I had)

On this occassion there is infective change in the right upper lobe which is new. There is partial volume loss in the middle lobe
which is long standing.
The tree-in-a-bud abnormality in the left lung which is presumably infective, if anything, is slightly better on this scan.

Regards the mesothelioma is some evdidence of progressive pleural disease at the left apex.
For example, the soft tissue mass adjacent to the left subclavanian previously measured 11 x 22 mm
and now measures 22 x 36 mm. The disease at the left base is however unchangedin appearance.
The paraaortic adenopathy is slightly smaller as is the para-aortic adenopathy.
There is still no evidence of disease in the diaphragm.

Conclusion : Mixed response with increase in the pelural disease at the left apex but slight improvement in
the mediastinal deisease



Results today.

Amber kitten deciding that the tree is a climbing frame and play toy for her.

Good luck to Cher who is in Germany having her treatment today, she travels all the way from Germany. The Prof has been wonderful agin, he has said anyone who wants to can return to chemoembolisation as chemoperfusion seems to be causing some unwelcome side affects.

I am off to the support group today and looking forward to meeting Phil and his wife. This is our second meeting and will hopefully be as popular as the first one last month.

I get my CT results this afternoon. This will include results from the TOF. Dr TOF will do an operation if it isn't fixed. He will put the bear clip on that he talked about before.
He is wonderful too, how lucky am I to be surrounded by such dedicated and fantastic Dr's? Wish everyone could have the same.

The picture is of Amber climbing our Christmas tree. I put it up early every year as it marks a milestone for me. I always celebrate reaching my next Christmas. She decided that it shouldn't be decorated and was playing with the baubles....naughty Kitty!!!

I know Christmas is such a very hard time for many. My thoughts will be with all of them who have Christmas without their loved ones.



Monday, 8 November 2010

Great night last night.


I went out last night with some friends. We went to an Ann Summers party and it was brilliant. We had some fun dressing out in the outfits. I ordered the pirate outfit as Chrissy, the chaffeur, is organising a twice married club night out.
I am looking forward to it.

I have got my Christmas tree up, much to Amber kitten's delight. She has been climbing it and taking the baubles off.

Good luck to Mike, Cher and Mr P who are having treatment in Germany this week. The Prof has been looking into why so many people have been having pain and breathlessness. I sent him an email on behalf of a warrior as she wasn't sure how to ask him. He congratulated the warriors on looking into this and said he had seen the same thing. He thinks it could be the chemoperfusion treatment so is happy if anyone wants to go back to chemoembolisation.
Email him before you go.
Well done warriors, together we have worked this one out. There is a great support group on facebook and it has helped many people to talk about how they are feeling. We have warriors in the UK, USA, Australia and South Africa. The beauty of this support is there is usually someone online to chat too.