Saturday, 31 July 2010

Research, research, research!!

I have found more articles of adults with TOF having a repair done.

Quote from one article :

A 55 year old man had a history of persistent cough since childhood. Throughout his adult life he had recurrent bouts of bronchitis. He also noticed that he often coughed or choked after swallowing liquids. He had right side pneumonia just 3 weeks before admission. A chest X-ray showed a middle lobe consolidation. Examination with a flexible bronchoscope showed a fistula in the posterior wall of the trachea at its midpoint. Barium swallow did not identify the fistula. Oesophagoscopy showed the entry point to lie 20 cm from the incisors. This fistula was clearly seen on the subsequent computed tomographic scan which was performed to assess parenchymal damage.
Post-operably he did well and at follow up 6 months later he remained symptom free.

I am taking this and other information with me as there is a chance my TOF could be sorted out.

Friday, 30 July 2010

Occupational Health call.

I had a call from the OC department at Orange, or Everything, Everywhere as it is now known.
I was planning to go back to work next week if my chest infection has gone. The officer has advised me to have a medical check with my employers Dr's to confirm I am fit enough to go back. So, I will be off for even longer now. It will take a couple weeks for everything to be put in place so I may be looking at the end of August.

GP has called.

My GP sounded a little concerned that I was going to see another Dr. He wanted to know what i thought I could achieve from it. I told him i wanted a second opinion and felt if I didn't do it, I may regret not looking further into it. My GP seemed quite supportive after I had explained why I needed to go. I think, deep down, he knows that I will go anyway.
He said he doesn't have a lot of info about the TOF, only a letter confirming it is there.
It was good to know that he is supporting me going even if I have pushed him into a corner and given him no choice : )

Chest infection.....GO AWAY!!!!


I have a sharp pain in my right shoulder which is due to the chest infection I have. Yesterday I had lunch with my friend, Tina, and had a phone call from the Dr's surgery. My GP is calling me today as he hasn't sent any information off to the Dr in Taunton about the TOF. He says he wants to talk to me about the consultation. I hope he isn't going to try and talk me out of it. I feel I should have a second opinion concerning the TOF as I am not satisfied with what I have been told by the previous Dr's. They have said it is the stent or pneumonia for the rest of my life. The stent is too painful to keep in and it slips out of place, I have had 2 put in and taken out. If he wants me to cancel the appointment, It isn't going to happen. I need to know that there is nothing can be done or may be there is something. I did find an article on the web which concerns a 27 year old man with the same condition who had a supraclivicular incision. I am going to take the information with me on Monday and id this Dr says I am unable to have the TOF sorted out, I will leave it at that.
I will have to sort out some kind of diet as I am sticking on food constantly and feel I will be asperating again if I am not careful.
I will update when I have more information.

Tuesday, 27 July 2010

Taunton on Monday.

I have been busy today calling a Dr in Taunton who may be able to help with my TOF. I rang his secretary and was expecting to be told to speak to my GP for a referral. I was surprised to find I had an immediate appointment, tomorrow morning at 9am!!!
I turned this one down as my GP and oncologist need to fax info through about my TOF.
I have been given an appointment on Monday at 2:40pm, I am impressed.
I found an article on the internet that has a case study of a 27 year old man who had the same condition as myself. He had an operation, Supraclavicular incision....I believe it is an incision above the collar bone......and, as far as I know, is fine.
He had chest infections all through his life. It was interesting to read of another person with the same condition. Whether having the mesothelioma is going to make things more difficult, I don't know. I will find out more on Monday.

To read the article, copy and paste the address into your address bar.

http://resources.metapress.com/pdf-preview.axd?code=842100351802606p&size=largest



Monday, 26 July 2010

More antibiotics.

I have seen my GP and had a list of things to talk to him about. First and foremost was the mucky cough and throat infection I have had. I have more antibiotics to take, I will be rattling soon.
I also asked about the speech and language therapist at the hospital as I was supposed to be having a video thorscopy to see why I am having difficulty with some foods. I think most of it is down to the radio therapy I had last November. It was very near the oesophagus which is why, I think, I have had so many problems.
I wanted to get some more syringes and needles for my mistletoe as well. The mistletoe is good but I do need an infusion as my immune system has got used to the dose I am on. Finances don't stretch to a journey and hotel plus the treatment at the moment and there isn't anything near me that would help at the moment.
All in all I am feeling well and am looking forward to returning to work in August. Every time I say that, something happens..... hope nothing manifests itself this time!!

Doctors again!!



I have had a throat infection for a few days now and have tried to get my own immune system to kick it. It hasn't and it has now turned to a chest infection. i am off to the Dr's at 5pm today and will probably get some more anti biotics. I think i should move into the chemists and just eat them off the shelf : )
Facebook is taking off for our support group. It has meso warriors from Australia, USA and UK. The latest people to join are Linda and Steve and it was good to see Mr Sherlock Brown on there. He is a patient speaker at the Mesothelioma UK meeting in London this year. The first meeting I went to, Graham was the speaker and he was a great inspiration for me.
It will great to here him talk again and i will have the great honour of following him as I will be talking as well.

The pictiure above was painted by Cher Bright from Australia, She has mesothelioma and went to see the Prof and has become a survivor through his treatment.
Cher continues to do well and is also one of our meso warriors.

Saturday, 24 July 2010

My 51st Birthday




It's been a quiet day today. Kieran went out to a theme park with his friend, Richard is looking after my friend, Tina's dogs and Siobhan is in her room. We all got together this evening and went out to eat. I am so pleased to have reached my 51st birthday and don't feel I will be going anywhere for a very long time.
The children and I went to Frankie and Benny's in Plymouth for a meal. They always do a good birthday, they play the birthday song while the waitress/waiter brings out the birthday cake and that song leads into Cliff Richard's congratulations. We never tire of it.

Wednesday, 21 July 2010

School break looming.

Kieran finishes school on Friday and will be returning in September in year 9. He has had a tough time this year, I am hoping this is all behind him now. He finds it very difficult to cope when there are challenging children in the class, unfortunately this will always be the case at school for him as all the children are complex. He has grown up into a very polite and respectful young man and I am very proud of him.
I am going to clear the lock up we have over the next few weeks as we have a lot of stuff up there which was stored before we moved house. I will be having some friends come in and be brutal as I have obviously not missed a lot of what is in there.
I am also hoping to return to work in August, I am feeling a little nervous but am looking forward to going back and seeing all my wonderful colleagues.

Monday, 19 July 2010

Well done Kieran.




Here are some pictures of Kieran doing his relay for life walk. He did 50 laps of the circuit which is around 16 miles. I am so proud of him.

Sunday, 18 July 2010

What a wonderful weekend.ae

Kieran and Richard or should I say Captain Rex and Commander Cody are ready to go to the party. I hope every one behaves.
Richard and I ready to rock!!!
Rich and Kieran as the Blues Brothers
Rich and Ashleigh with Freddy Mercury, AKA Harry Lea.
My sister Wendy and I enjoying the night.

Saturday evening was Richard's 21st birthday party. He shared it with Ashleigh, my friend, Tina's daughter who is 18. We had a fabulous night, the entertainer, Harry Lea, didn't disappoint us either. He was brilliant and had tributes to Queen, Austin Powers and the Blues Brothers. Kieran was doing a sponsored event and took time out to come to the party. The Rich and Kieran dressed as Clone wars storm troopers. They looked fabulous and Ashleigh was just stunning.

Sunday Kieran finished his sponsored walk for the relay for life event. He did really well, walking around the track over the 24 hours the event took place.
So....my son is now 21, all he needs now is a job!!!

Saturday, 17 July 2010

Mistletoe petition.

I have created a petition to ask the government to reconsider their decision to scrap NHS funding for mistletoe and other homeopathic treatments.
I still pay for my mistletoe but others can get it on the NHS.
The link for the petition is below. Please copy and paste into your address bar. Thank you for your support.

http://www.gopetition.co.uk/petitions/mistletoe.html

It's party time!!!



It's Richard's 21st birthday party today. We had a great day on Thursday, his birthday. He went out with Siobhan in the afternoon to the theatre. They watched Dirk Benedict, Face in the A-team, Play the Columbo role in a play called Prescription murder. Later on we all went out for a meal at Frankie and Bennie's. When we got back home he was persuaded to go out with his friends. Rich got home about 12:30pm and wasn't drunk, he was fine. I am so proud of him, as he says, you don't need to get drunk to enjoy yourself. I hope he enjoyed his 21st.

Yesterday I went to the theatre to see the same play. It was good and great to see that Mr Bendict didn't change the Columbo character, it was as Peter Falk had created him.
I tried to get an autograph from the Face man for Rich but he was in a rush. He had a car waiting to take him to London. He said it was unfair to sign just a few autograph and not all of them. He also said that the performance was his last. He wasn't going to do any more acting.

Today it is a busy day. Richard's party this evening that has been split with my friend, Tina, as her daughter, Ashleigh is 18 next week. But first, it's relay for life. Kieran is taking part with his dad. It is a 24 hour event. Kieran' dad has a team, Kieran is taking time out for the party and then back with his dad. I hope the rain stays away and my friend, Gina who has helped organise the event, is rewarded with a great target.



Thursday, 15 July 2010

Happy Birthday Rich!!!


My eldest son, Richard, is 21 today. He had a bad start to life when he was born, he had Oesophageal Atresia and Trachoe-Oesophageal Fistula which means his food pipe was connected to his wind pipe and he couldn't swallow anything. It was a distressing time for Siobhan and I. I didn't understand what I was being told, all I kept thinking is why are the Dr's telling me I have a TOF baby, we aren't posh! 21 years later, I find out I have the same condition. Richard has done well and started improving when he was 7...we haven't looked back since. I hope he has a wonderful day. He is going to the theatre this afternoon with Siobhan to see a play called "Prescription murder". It is one of the Columbo stories, the first pilot Peter Falk did of the detective series. Columbo is being played by Dirk Benedict, Face in the A-Team, another of Richard's favourite shows. This evening we are going out to eat at Frankie and Benny's, they always do a good birthday song there.

Other congratulations have to go to Siobhan. Today she gradualted from college. She didn't want to do the ceremony, I am happy with what ever she wants to do. We will be celebrating that today too.
On Saturday Rich has his official birthday party. My friend, tina's daughter, Ashleigh, is 18 at the end of the month and we decided to combine the 2.
Should be a great night.

Tuesday, 13 July 2010

Meeting another warrior.

I am meeting Jennifer from Newton Abbot today. she diagnosed around 4-5 weeks ago with mesothelioma. She is still very shell shocked with the diagnosis which is understandable.
I went to meet her at Endsleigh garden centre with my daughter and her boyfriend. We met Jennifer's daughter, Jodi. Such a lovely family and such an unfair diagnosis.
I have also been busy organising Richard's birthday party which is on Saturday. My friend Tina and I have decided to have a combined party as her daughter, Ashleigh will be 18 and Richard will be 21.
Everything has been quite quiet here for a change. I am hoping to return to work in August. I am hoping that nothing else happens in between time.
Kieran has his sports day tomorrow afternoon and I am hoping it doesn't rain. He is also helping raise money for a sponsored walk he is doing with his dad. He is doing the relay for life and is helping by holding a mufti day at his school. Well done Kieran x.

One last point, Keiran informed me that I am not his real mother as he had a right paddy tomight ....... : ) So on that note, would his real mother please come and collect x x

Saturday, 10 July 2010

Happy 21st Rochelle.


My neice, Rochelle, is 21 today. I cannot believe that 21 years has gone so fast, It only seems like yesterday that I told my sister, Wendy, she should have waited. Rochelle was due on 22nd July, Rich was due on the 1st July and was staying put. His head was not even engaged.
The picture above is from my 50th Birthday party. Rochelle was pregnant with her daughter, Lacey.
My little Richie will be 21 next week!!! Where does the time go?



Wednesday, 7 July 2010

A lovely couple of days.

Yesterday I went into the city centre with my daughter, Siobhan, we had a lovely afternoon. We haven't had girlie time for a while and it was a joy to be with her.
I went out with my friend, Carolyn today which was also lovely. I have a wedding in August and ended up buying a hat! I always buy hats when I am with Carolyn, she brings out the shopaholic in me : )
I have been asked to speak from a patients point of view at the next Mesothelioma UK day in October which I am looking forward to, The Professor will also be there. I am looking forward to seeing him again.
I had a call from Germany this morning, Prof Vogl had received my CD's that my oncologist had copied for him and called to tell me that all looked fine and he liked to hear my voice. He is such a lovely man.
Anyone wanting to go to the Mesothelioma UK conference on October 2nd can contact Dawn McKinley at : dawn.mckinley@uhl-tr.nhs.uk.

The meeting will be held in the Novotel, St Pancras, London on Saturday 2nd October.

k

Tuesday, 6 July 2010

Well done David.











David Phillips completed his parachute jump for mesothelioma UK and Papworth hospital. So far he has raised £815.00. I am so impressed with what he has done. David is a meso sufferer but this has not stopped him from doing this. He is so inspirational and he made it look so easy.

Monday, 5 July 2010

Meso warriors meet up in Manchester.





What a wonderful day, I have been priviledged to meet so many wonderful people this weekend. Friday was a great supportive day for all. Many had lost their loved ones to Meso and were marking their loss with action mesothelioma day.
Saturday Kieran and I met some more people who are fighting the disease or have had a loss.
We have all decided we would like to meet up again, maybe september and have somewhere more central. Margaret who came along, is our honourary member, she is seeing the Prof and has breast cancer. She is involved in this as the rest of us.

Saturday, 3 July 2010

Action Mesothelioma day.

Me with Pam who lost her husband to Meso last year.
Linzi from F.A.C.K Families against corporate killers.
The wonderful Tony Whitston of Greater Manchester Asbestos support group, if your entitled to anything Tony will find it.


Action Mesothelioma Day was wonderful. I met Pam who is staying in the same as us in Manchester. We went to Albert Square, Manchester for the meeting which was arranged by Tony Whitston and his group. There was a dove release followed by a meeting in the town hall. Everyone was so welcoming.
The weather has been great which didn't emulate the heavy hearts of the people with photos of their loved ones who had died of mesothelioma.
Pam and I had lunch with the group after the meeting.