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.


Sunday, 7 November 2010

Remembering Steve McQueen.


30 years ago today, Hollywood lost one of its most talented actors at the age of 50. Steve McQueen died of Mesothelioma, 30 years later the research and survival of mesothelioma sufferers has not moved forward very much.
If Steve had been alive today and had been diagnosed, would he still be in the same position?

Thoughts and love to all warriors, past and present. Together we can try and make a difference.

Saturday, 6 November 2010

Happy anniversary house!!!

Yesterday was lovely, We had a quiet day for Siobhan's birthday.
She went out to lunch and in the evening we had pizza. I can't believe she is 24 now. Where does the time go?
I am feeling very well, I get my CT results on Wednesday for the TOF and the Meso.
But first on Wednesday, I will be meeting some warriors at the hospital. Phillip is a new warrior and I am looking forward to meeting him.
I haven't got my Christmas tree out of the attic yet. I will do that next week, it is always great to reach another goal and Christmas is a big milestone for me.
Another milestone is that we have been in our new house for one year today.
It doesn't seem 5 minutes ago we moved in.... next step, Kieran's birthday, he will be 14 and is turning into a lovely young man. He is very keen to do his travel training on his own and doesn't quite get it that he isn't the one who makes the rules. I am so pleased he is so keen to do it.


Friday, 5 November 2010

Happy Birthday Siobhan x x








24 years ago today was a wonderful day. at 8:51am I gave birth to a beautiful baby daughter, weighing in at 6lb 15oz.
I have a cesarean as Siobhan was a breech baby, she was 2 weeks early, she was originally due on the 19th November but due to me having a small pelvis, an operation was suggested.
My first vision of Siobhan was seeing a beautiful little baby in a cot in the hospital, so tiny, so small she had to have mittens on her hands and feet as the booties were too big.

Happy 24th Birthday, you have made me so proud, studying hard and getting your BA honours degree.
I know you will go on through life being the success you are and will continue to make me proud.
I love you so much, I hope you have a wonderful day x x

Thursday, 4 November 2010

Tenerife.


















Tenerife was wonderful, very relaxing and lovely weather. I went with Kieran, My friend, Tina and her son.
The weather was wonderful, 104 degrees.
We stayed near the Amerilla golf course, such a beautiful place.

Wednesday, 3 November 2010

What a busy day!!!

This morning Kieran did travel training, he is learning how to get to school by himself. He has to get 2 buses, such a big challenge for him. His teacher arrived this morning to pick him up and returned with him later on in the afternoon.
I took the cats to the vets with the help of Rich. Amber kitten was crying all the way there, it is her first time. I got her chipped, the poor thing had to have it done twice. It looked painful and she cried both times : ( The first chip didn't give a reading so she had another one. They both had their annual jabs, Amber goes back i 3 weeks for her second lot.
When I go back, there was a phone call from the hospital, I had missed my appointment for my CT scan. The receptionist rebooked it for 3:00pm. I arrived and got ready for the scan, after having the intravenous contraption done for the dye, the girls went out of the room, they were back in within a few seconds, I was too high up. Dr Meso had asked for the TOF and meso to be checked. I shuffled down the bed, they went out, a few seconds later, back again...... tongue stud and nose stud were showing on the scan....... out they came and out went the girls for the thrid time. this time it was ok, all done and results next Wednesday. I am hoping all is the same.

I have emailed the prof for a friend as it has been noticed that a lot of people are in pain with the treatment. He changed it from embolisation to perfusion a while ago and it does seem to make a difference. He sent an email congratulating the warriors on noticing and said he would gradually return to embolisation. He stopped it as there were spine problems with some patients. It must be difficult sorting out what works best.
Good luck to Ronnie and Cher who are having treatments over the next week.
Anyone who wants to return to embolisation, let the prof know, he will probably change it for you.

Tuesday, 2 November 2010

Congratulations


Congratulations to Andrea and Rosh on the birth of their baby son.
He was born on 25th October at 18:27 weighing in at 6lb 2oz.

This is the first grandchild for both sets of grandparents and a special gift to Andrea's dad who had mesothelioma.

Love to you all from everyone at meso and me x x x x


Monday, 1 November 2010

Condolences.


It is with great sadness I report the loss of 2 warriors.
Max's dad passed away after in her words, "An heroic battle with asbestos cancer".
Julianne also lost her wonderful dad, Edward 'Ted' Bolton.
They will be missed very much by their families.
Todays blog is dedicated to these 2 fine men who should still be here, enjoying time with their families.
From all at mesothelioma and me and warriors eveywhere, thoughts and love are sent to both families at this very difficult time.