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.