Tuesday, 31 August 2010

More antibiotics!!

I have been to see my new GP today and she has given me some more antibiotics for my chest infection.
This one has been going on for a while. I will be glad when it has gone as it is making me feel very tired and it is painful.
This week will be filled with getting Kieran ready to go back to school. He returns on Monday in a new class and seems to be looking forward to it.
Also on Monday I am going to Taunton for a CT scan and a barium swallow. I am hoping the second stent hasn't messed up any chance I have of having the fistula sealed up.
I am meeting some new warriors today at the local hospital. Quite a few have come forward after the feature on the local news last week.
It is always good to meet new people and hear how they are surviving this deadly illness.

Sunday, 29 August 2010

Back from Guildford.

Kieran and I ready for the wedding.
Siobhan, Kieran and I, 2 of my lovely babies, the 3rd, Rich, was at home looking after our cat Stork.
Laura, Pete and little Chris.

Siobhan, Kieran and I have had a lovely weekend in Guildford. We went to Siobhan's friends, Laura and Peter's wedding, The weather was wonderful.
Laura dressed in a medieval outfit for her big day while Pete dressed a s a groom, they were joined by their families and their little son, Chris.

Friday, 27 August 2010

Off to Guildford for a wedding!!!

Siobhan, Kieran and I are going to Guildford today as Siobhan's friends, Laura and Peter, are getting married tomorrow.
Rich is staying home and looking after Stork the cat.
I hope the weather stays good tomorrow as the last week has been a very wet one.
We will be coming home on Sunday and the next week will be filled with getting Kieran's school uniform together for the week after.
I have had a few more warriors contact me for information after seeing Ron's piece on the TV on Wednesday night.
I hope they all get some result from any treatments they receive. It is always a great boost to see someone benefiting from treatments.

I went to the cemetery yesterday to remember my wonderful dad. I miss him so much and would love to have just one more conversation with him. I don't know what I would talk to him about but would just enjoy the moment of being with him, it would be so precious.

Thursday, 26 August 2010

4 years gone.

Today is the anniversary of losing my lovely father. I can't believe how 4 years has gone so quickly but the pain and heartache is still very much around, that part hasn't changed.
I am going to the cemetery today to remember my dad today. I expect the children will come with me. I will also leave some flowers for my cousin to congratulate him on becoming a grandfather.
2 Wonderful fathers taken far too soon. Life deals out some hard blows some times.

I hope my dad would be happy with the road I took and can see just how many people have benefitted through having treatment with the Prof.
Thank you dad for guiding me to Germany and clearing a path for others to follow.
I hope you can see just how much good it has done.

Wednesday, 25 August 2010

Early start today.

I am up and ready to support Ron on BBC radio Devon this morning.
It is raining and cold but that won't stop me driving to the studio and highlighting mesothelioma and the Prof's wonderful treatment.
A lot of people are benefitting from his treatment and I hope it continues.
This decision will give sufferers another boost as they shouldn't have to pay for the treatment. There isn't anything that has had an impact on mesothelioma. This is one step closer to getting the treatment in the UK, well done Ron!!!


Tuesday, 24 August 2010

BBC spotlight tomorrow

The interview about Ron Bonfield will be on tomorrow's spotlight south west programme as Mrs Cameron's baby decided to arrive a month early while the Cameron's were visiting Cornwall. It has taken over our local news.
Tomorrow, 6:30pm BBC spotlight! Also tomorrow morning BBC radio Devon are covering Ron's story. 7:30am and 8:00am.

TV and Radio.

I am supporting Ron Bonfield on BBC spotlight south west TV today. I will be filming a short feature about Ron and his success with his PCT. I am also doing a short piece on Radio Devon tomorrow morning at 7:30am and 8:00am.
I am so pleased that Ron has got a consideration for any further treatment he needs and hope a lot of other PCT's follow this. We are another step closer to getting the treatment in the UK.
Most treatments available at the moment don't give the benfits of chemoembolisation.
Well done Warrior Ron and also Dawn who has worked with Ron to get this decision.

Saturday, 21 August 2010

Lovely day today

I went into town wityh Siobhan today, we haven't had a girly day for a long time. We have a wedding next week so looked for some boots for Siobhan to wear. While looking for them, we found a dress that was perfect for her. She also bought a small fascinater for her hair. She will look gorgeous. When we got home, I dyed her hair for her and later we had a takeaway curry while watching the new series of X factor and what a show it was : )
Kieran is spending the night with Richard at my friends hopuse, they will be home tomorrow.
It was so lovely to spend some quality time with Siobhan. We should certainly do it a lot more.

One last note, I bought myself a new camera!! My origianl camera would have cost £140 just to look at it, I bought a new one for less.
It is a Sony, same make but more pixels. My original was 12.1 pixels, this one is 14.1 and I am keeping away from Kieran when he has a football!!!

Wednesday, 18 August 2010

Well done Kieran!!

Kieran went to the dentists today to have a filling. He did really well. He asked me before he went what it would be like and I explained that it would be a little noisy and he would feel vibration. He was getting a little worried about it but seemed to calm down when we saw the dentist.
She said his teeth were looking good and let him feel the vibration of the drill before she did anything. Kieran was so brave, he didn't need to have it numbed. It was over in minutes. When we got outside, he asked me if I was proud of him, I said yes and he then asked, "well, what do I get for a treat?" If only everything in life was that easy.
He will get something for being brave but it just shows how he has it all worked out. He is with his dad for 3 days and will be back on Friday evening. Next week we are off to Siobhan's friend's wedding in Guildford, Kieran and I will definitely be dressed for the part!

Tuesday, 17 August 2010

Another Sick note!

I have been busy today sorting out and putting away the stuff we got from the storage unit and I think we are winning at last.

I went to the Dr's this afternoon and saw my new GP who was lovely. She has signed me off for another 2 months as I still have the chest infection and I have also got to have an op to close the fistula.
I want it all out of the way and make a fresh start back to work.
Kieran has stayed with Rich for a couple of days. Rich is looking after my friend Tina's dogs while she is away and Kieran is helping. He feels very grown up and its good to see them getting on better. I can't believe he is going to be 14 in December, he still seems like my baby. Why do they have to grow up.

Monday, 16 August 2010

Busy, busy, busy!!!

I am sorting out my bedroom today, the mirrored sliding doors have broken and have made it difficult to put things away so today I have decided to shift them and put up a long curtain instead.
We also have a lot of boxes of our stuff we want to keep to go up into the loft.
The storage unit is now empty and I have been amazed at just how much was stored away that was either rubbish or things we didn't need.
The house is looking like a warehouse at the moment, poor house : (
The chest infection is a lot better thanks to the new antibiotics.

I must say a quick congratulations to my cousin, Sian and her fiancee, Simon on the birth of their daughter, Elizabeth. I am sure my cousin Robert, Sian's dad, will be very proud. Robert died in 2003 at the age of 41 and is still very much missed. Well done Grandad Robert where ever you are x x x

Friday, 13 August 2010

Great news on the TOF.

I received a letter from the Taunton Dr today and I am so happy. He has managed to track down a paper detailing a lady of 74 who had a tracheo oesophageal fistula. It was bigger than mine and has been successfully sealed with an over the scope clip.
She was transferred to an Italian hospital in March 2009 for the procedure.
Why can't all Dr's be like this. The Taunton Dr has been amazing. He is so pleased to have me as a patient and has said he hasn't seen this condition in this country and the 74 year old lady is the first in world literature. No one else has performed this procedure in the UK and he seems happy to do it. He is going to arrange training for himself on how to use the clip.
The over the scope clip comes from one of my favourite places that haunt me wherever I go............... Germany!!!

On another note, I have been to the Dr's today and have got different anti biotics. How difficult was that?

Bad night last night.

I didn't have a very good night last night. The anti biotics are not working, I knew they wouldn't as I have had them 3 times in a row. I am going to try and get an appointment today, but not with the GP I have just fired. I need different tablets as the chest infection isn't getting better. This one has been going on for around 2 weeks could be more.
It needs sorting out, my shoulder last night was vert painful and the coughing woke me up about 2am. Such a shame I have no faith in my GP as I felt like he had discarded me.

Thursday, 12 August 2010

GP changed!

I contacted my GP's surgery today and changed from the one I have had for years to another one. It is such a shame as he had been so supportive with Kieran and all my illnesses but it wasn't working out.
I now have a lady GP, hopefully this will not affect anything at the surgery but if it does, I will find a different one. So sad and upset to have to do this.

Wednesday, 11 August 2010

Meeting Jan.

Jan and I

I met Jan for lunch today and it was wonderful. We have been chatting via email for around 3 years now. Jan lost her lovely husband, Russ, to mesothelioma in 2008. It nign congentitalwas great to meet and I am sure she felt the same as I did, that we had known each other forever. It certainly won't be the last time we meet but the first of many.

I went to my GP's surgery to pick up a script and found I had been given the same anti biotics that I had before the erythromicin. The receptionist went to see him and he sent her back saying that as I am allergic to all of the others, that is all I have. I felt very cross with this answer as I know I can take Augmentin and it works. I don't feel as if I want to see him anymore. He seems very off, not sure why, maybe it is because I don't sit on my backside and fester, I look for solutions.
On a positive note, the TOF Dr in Taunton has found a paper detailing a benign congenital tracheo oesophageal fistula literature from Italy. This procedure hasn't been done in this country ....YET!!!
I have 3 options open to me, the first was the stent, that didn't work, the second is using an atrial septal occlusion device, yes I know.... I will wikipedia it : )
The third is the over the scope clip. He is still certain the third option is probably the best. I will wait to hear from him about an appointment to discuss the matter further.

Tuesday, 10 August 2010

Anti biotic blues!!

I started the anti biotics my GP gave me yesterday and I am feeling sick. He has given me eurythroped which I know Rich is allergic to, seems I may be too.
I am so fed up with all this carry on.
I would rather stick with the pain than feel worse by taking the tablets.
I will call the GP and ask if he can write a script over the phone or make an appointment. I supposed it depends how he feels.

I am meeting Jan for lunch tomorrow. Jan and I have been in touch since the website was launched in 2007. She lost her lovely husband and has joined our warriors facebook group for support.
I hope it helps her. It will be great to meet her at last.

Monday, 9 August 2010

Me and Theo on the net.

The Winchester award winning film made by Claire, Nick and the guys is now online.


Copy and paste this link into the address bar. Scroll down in the awards section and select 'Me and Theo'.
Bear with it for a few seconds as the count down screen takes a while to go.

I am off to the Dr's at 5:30pm this evening. I hope I get different antibiotics as the last ones I have had aren't working.

Sunday, 8 August 2010

car boot sale today.

The weather stayed lovely today for me and my friend, Gina, to do a car boot sale. I got to the first one and was turned away as they said it was too busy. I called Gina and we met up, we then trundled out to Ivybridge to the donkey sanctuary where another car boot sale was being help.
I sold a lot of mine and the children's things for pences rather than pounds and made around £30. This was split 4 ways, Kieran now has a little money for his game he wants. I am going to try and persuade him to come with me next Sunday.
It has been a busy weekend and I am now paying the price for that. My back is aching so much. I am back to the Dr's tomorrow for different antibiotics to clear up this chest infection, it is so painful and I am very breathless. Nothing will keep me from having fun though and regardless of the chest infection, i will be getting things ready for next Sunday.

Kieran is coming home today, He has been away with his dad for the weekend so it will be great to see him.

Saturday, 7 August 2010

Wine tasting in Devon.

In the garden of the local caf'e.
Our Devon cream tea.
This poster is in the wine cellar.
An observant Carolyn found the shop and the guy in the poster....had to have a picture taken of course : )
The fourth tipple, White 2009.
The third tipple, 2009 Ros'e.
My cheese platter.
The second tipple, 2006 Ros'e.
Andy and Andrea, such lovely people and were so kind to us.
Carolyn and I tasting our first wine. It was a sparkling white and was perfect.
The eden vineyard

Last year I was given an experience voucher by my friends, Wendy, Lyn and Jaqui. I have at last cashed it in. I took my friend, Carolyn, with me. We had a wonderful time. it started off a bit rocky as we missed the train from Exeter to Topsham. We got a taxi to Topsham and found the wine tasting cellar. It was empty apart from a young girl. We asked her if we were in the right place. She told us that the vineyard was further away. I rang for a taxi to take us to the vineyard and as I ended the call, a couple , Andy and Andrea, turned up asking the same thing.
Carolyn told them that the vineyard was not close to the tasting cellar and that we were waiting for a taxi to take us. They said they had a car and we were welcome to travel with them.
We found the vineyadr eventually and joined a group of people who were also on the tour.
We then made our way back to the wine tasting cellar.
We had lunch and tasted 4 different wines. My voucher allowed me a complimentary bottle of wine.
We left the wine cellar and then walked into Topsham to have a look around. We stopped for a Devon cream tea in a local tea shop. We then found the pub and had a bacardi and coke.
It was such a lovely day, the rain kept off. The only thing that spoiled it was my shortness of breath and the pain in my back from my latest chest infection.

Tomorrow I am doing a car boot sale. I am selling for the first time, should be interesting. Anything I make will be split 4 ways.

Thursday, 5 August 2010

Busy day today.

The children and I have emptied the storage container we rented when we moved house. I cannot believe how much rubbish was in there. I filled the car with our goodies yesterday and did 4 trips today. We have 4 bags of rubbish so far and around 6 boxes for a car boot sale I am doing at the weekend. I am shattered now.
I still have a pain in my back from the chest infection. My GP didn't give me any more antibiotics, I hope it goes away on its own but if it doesn't , it will be back to the Dr's.
Kieran has gone away for the weekend with his dad.
Saturday I am off to cash in my 50th birthday present from last year, it was an experience gift. The gift I chose was wine tasting. My friend, Carolyn and I will be going to Exeter and having lunch and wine tasting. Should be a good day. In the mean time, my poor house looks like a junk yard. Once the rubbish and car boot stuff has gone, it should be much better.

Wednesday, 4 August 2010

Well done Claire, Nick and the guys.

In 2007 a group of students contacted me about an interview to make a film about asbestos and Mesothelioma. They made a short film for their college course work. After putting it into a few festivals and not winning, I am pleased to say that at last, they have!!!

They have won the 2010 Winchester film festival documentary award.

Congratulations guys, look forward to seeing a lot more of your work x

Tuesday, 3 August 2010

Doctors today.

I went to see my GP today about my appointment yesterday and to get another sick note as I have been told to have a medical before I return.
He wasn't to happy yesterday about me trotting of to Taunton under my own steam. He was very skeptical. I told him about the 2 procedures the Dr said I could have to seal off the fistula. He then started to understand that the Dr was a reputable one and if he wasn't, I am sure my oncologist would not have sent a referral letter.
Kieran has been a bit high today. He was messing about in the garden and kicked his football at me on purpose. Rich told him twice not to do it and as I was going to explain how it feels when someone is kicking a ball at someone else, he kicked it and knocked my lovely camera out of my hand.
Hence, the camera is broken!!
I am now going to have to buy a new one as the excess on the contents insurance probably won't make it worth while in claiming, so no pictures until I get a new one : (

Monday, 2 August 2010

What a brilliant day!!

I have returned from Taunton a very happy bunny. The picture on the right is the bearclip that will be used to seal off my fistula.
The Dr I saw was fabulous, very positive. He has told me that he is going to look for a Dr who can perform an over the scope endoscopy, if he can't find anyone who can do it, he will do it. The majority of people have malignant TOF, mine isn't malignant therefore I will be the first to have this done.
He was quite surprised that I came to Taunton to see him about my condition as Plymouth is supposed to be the centre of excellence for TOF, Now theres a surprise!!!
The Dr reminded me of the time I first saw Prof Vogl and how positive he was. How lucky am I to have met some of the best Dr's in the world.
I will have to wait now and see wht this Dr's finds. How exciting!!!

Nervous and excited !!

Today Siobhan and I are going to Taunton, Somerset, to see the TOF Dr. I am so nervous, I hope he understands why I am trying to sort out the TOF situation. I am taking some case studies from medical journals with me and also my discharge information that shows when the TOF was diagnosed.
I haven't got much of a choice in what i do as my other option is to have chest infections and pneumonia for the rest of my life. I really don't know what he is going to say, all I have heard is that he knows a lot about TOF and has been recommended by TOF parents.
The TOF support group have been great and I have also picked up another friend, Gaynor, who's son is a TOF of 23. He has more problems than Rich but she has been so supportive.

My chest infection is going slowly, I still have a small pain in my shoulder but nothing like it was a few days ago.
Well..... I am off to get ready for my appointment, will update when we come back from Taunton.