Sunday, 30 January 2011

Frank.


A lovely friend on facebook, Jane, lost her hero last night, her dad, Frank.

Condolences to her and her family.
Sending love and strength to you all to help you get through this very difficult time.
They will now have to travel their road without their warrior, It would be good to think that he will walk in their footsteps, watching over them at this devistating time.

x x x

Saturday, 29 January 2011

Kieran home today.

Kieran stayed with his dad for a few days, hope he was happier there as he said it was boring with me on my own!
I had a letter from Dr TOF who has said he will see me in 6 months unless I have any other issues with the fistula.
He seems happy that the clip has done the job but as I still cough when I drink, there maybe a small gap still but this can be sorted out.
I think personally that the coughing is the memory of the oesophagus, if that is possible. It has happened for 51 years, can it remember when I drink I cough?
At least my children now know there is a congenital defect running through the family, it runs alongside the twins gene. My mother is one of a twin, when Rich was born, many times there were twins and one was a TOF. Just feel sad for my uncle Fred who died at 15 days old of starvation, it could have been the same defect and my grandmother blamed herself for not being able to feed him. The TOF operation was started in 1942, Uncle Fred was born in 1938, he didn't stand a chance, poor little thing.

I will be contacting my oncologist to book a CT scan to check on Theo. I am hoping that he enjoyed his stay over Christmas but has now gone back to Germany, taking a few more personal items with him. It's not that I don't love you Theo, I want to love you from a distance.
I saw a film advertised last night called "Paul" It looks fun and I am hoping the children agree and we can all go and see it together. We haven't done that in a while.

Friday, 28 January 2011

Mr P


It is with great sadness I heard that Mr P had passed away after going into hospital.
His wife rang yesterday and said he had passed away the night before, she is, understandably, heart broken.
He was such a lovely man, and his wife, a very sweet lady.
My thoughts and love are with Mr P's family at this difficult and distressing time.
He is now in the arms of the angels and will be watching over his lovely wife and family every day.
Todays blog is dedicated to Mr P. It was an honour and a pleasure to have met you.

Condolences to all x x x x

Wednesday, 26 January 2011

Support group meeting.

I went to the local support group meeting this morning. It was packed, quite impressive. There were some new faces and, as usual, the hour long meeting that starts at 11:30 am went over time again. I left at 1:50 pm. There were still a couple of people there still chatting.
We had a talk from a physiotherapist. She had some really helpful tips for everyone.
One of our number wasn't there, Mr P, he isn't well. We all thought about him and his wife today.
Mr P has the sarcomatoid mesothelioma, the most aggressive kind, the kind that doesn't seem to respond to anything. I am hoping he gets through this latest blip and send love and strength to him.

The next meeting is on 2nd March. We discussed having our own Christmas cards and having a raffle each month which everyone seemed very keen to do.
After the meeting I went to the local garage where Halo had her wheel pedicure done. I got her tracking checked. She was a little out, not much, the mechanic said she has probably been like that a while and seemed impressed that her tracking was good.

Siobhan and Rich are not back home, Siobhan will be back tomorrow, to Kieran's disgust. He told me it is boring being with me. I tried asking him if he wanted to go to see a film or go out to eat, nope!! not interested. He is missing Siobhan and Rich, I have told him that when they eventually leave home, this is what it will be like, still doesn't like it!! Well there is no pleasing some people : )

Good morning Ann!


First thing I have to do is say a very good morning to a good friend in the USA.... Ann, she is our resident warrior nurse but has had a few problems with an operation she had on her hand. Ann lost her mother to mesothelioma and strives for a cure. She is a great support to many warriors on facebook.
She read yesterday's blog and remarked how she thought my comment about my little car having a pedicure was "cute".
This is a message she left on my facebook after I commented she must have read my blog.

"Everyday I get up , take the dogs out, get coffee, log on computer, first thing I look at is your blog, then the local news. My daily routine"

Good morning to you Ann, hope your feeling good and your hand is getting better and want to take this opportunity to thank you for all your support x x x

Tuesday, 25 January 2011

Carl.

Love is sent to Lori in the USA who has lost her wonderful Carl to mesothelioma.

It is always heartbreaking to hear these words.
Condolences are sent to Lori and family, love and strength are also sent to Lori and her family as they get through this devistating time.




Monday, 24 January 2011

4 new tyres!


My little car now has 4 new tyres. Up until now I have always got her second hand ones but she deserved a treat. Lets call it a car pedicure!
She needs a good polish and clean up, might pay the boys to do that. Kieran loves earning money so will definitely do it.
I love my little car, I passed my test 6 years ago and we have been together ever since. I don't ever want to lose her, we are a great team.

Saturday, 22 January 2011

Tyres!

The theatre last night was wonderful, my friend and I enjoyed the play, Diary of Anne Frank. I have never read the book so was shocked to see that Anne had died a year after being found in the annex, she was about 15 years old, what an inspiring person she was, even as a teenager. She would have gone on to do a lot more in her life if she had lived and probably would have been the famous person she strived to be. In the end she got her wish, she is very famous and taught to children everywhere, reminding them of how life was living in a war. After the show we went for pizza, unfortunately it wasn't very nice, we told the waitress, she spoke with her manager and my friend and I had free desserts and drinks. It is so good to have decent customer service.

Today I decided to get my tyres sorted out, I have a slow puncture which needed to be seen to asap. I eventually found a garage that was open or could fit my little car in. I got 2 tyres changed and will get the other 2 done on Monday.
Kieran has gone to his dad's for the night so I am Bean free, feet up, beer and chocolate me thinks : )


Friday, 21 January 2011

Theatre tonight.

I went out for a coffee with friends yesterday. The sun was shining over the Barbican in Plymouth, we had a lovely chat, both friends have cancer and we talked about how we feel with living with this disease and how others see us.
We do feel it is hard at times as we feel it is taken for granted that we all look so well and are still here. This doesn't mean that the disease as gone away, it is still very much in us. One of my frinds has a brain tumour, I think this is worse than my cancer as my friend must feel at times that the tumour could take his mind first? I may be wrong. Families do carry on with life with their loved ones in it, they don't have the horrors going on in their minds that cancer sufferers do, they don't have the fears, the turmoil that continues on when outside we all "look so well"!!
Yes, we may look well, just don't look inside! Rant over : )

I am off to the theatre with another friend tonight, we are going to see the diary of Ann Frank. We are going for something to eat afterwards.

Wednesday, 19 January 2011

By golly, I think he has done it!!!

A picture of the clip that is sealing my TOF.

I went back to Taunton today to have a barium swallow x-ray to confirm the TOF is sealed. I got a taxi from the station and went into the reception, a puzzled receptionist couldn't find me..... it was the wrong hospital. A few minutes later I was back in the taxi and on my way to the right one.
I got in and sorted myself out ready for the radiographer.
He was lovely, asked me if I liked Perno, he then handed me the lovely contrast barium drink.....yuk!!!

The radiographer took some pictures and showed me the screen, it was fascinating, I could see my bear clip perfectly. I went upside down, back, front, sideways.... no leaks!
I am so thrilled, thank goodness Dr TOF believed in me. I am officially the first person in the UK to have this procedure done and because it has been successful, Dr TOF says babies with the same condition as mine will not have to go through major surgery, they can be clipped. What a step forward. I am now waiting for it to go into the medical books, how exciting!!
I got a taxi back from the hospital, the driver was the same one who picked me up on Monday, he looked like Eddy Windass from Corrie, bit of de ja vue me thinks : )

Monday, 17 January 2011

More barium swallows!

Well...the saga continues..... I am going back to Taunton on Wednesday for a barium swallow to determine once and for all that the TOF is closed. Dr TOF took a look at the CT images from Germany as they show the clip, it is looking good, he is concerned as I am still coughing while I drink. I asked him if it was something that I do naturally now as I have done it for 51 years, he isn't sure but the images looked good. Proof would be the contrast dye not going into the lung. hence the barium on Wednesday.

TOFless??

I am off to Taunton today and will find out, officially, if I am now TOFless.
I am hoping it is closed although I am still coughing when I drink.
If it isn't, Dr TOF still has a plan B.

Sunday, 16 January 2011

Reflection


It has been a weekend of reflection. Yesterday I did absolutely nothing, I sat on my butt all day. Siobhan was in her room, Richard was in his room, Kieran was at his dads and I was down stairs in the living room. Such a shame we didn't make the most of the weekend. I felt so tired yesterday and feel like, in the words of Austin Powers, I have lost my mojo.
I don't know if it is having another lot of treatment or just me feeling a little down but now and again it hits me that I have mesothelioma, it is there, haunting me, following me like a stalker, the black looming figure who seems to disappear when I turned to see who is there. It is like it is waiting for its moment. Maybe it is the loss of so many lovely warriors that has made me feel like this. The question of "why am I still here" echo's in my head often as the questions, "why does this treatment work so well for me".
I think the children are feeling it too. We all seem to be stuck, they have their own horrors to deal with, Ideally I would like to see them get jobs and be more independent but they are hurting too. Are they afraid to move on? Are they afraid that if they are not here with me, I will leave? We don't talk about it. With being out of work for so long, finances are tough. It does worry me that we won't manage. I don't want to sell the house, this is their investment from the claim. Why should we have too? I want to know that they can look after themselves if anything should happen and at the moment, I don't have that confidence.
Kieran will be fine, he has his dad, he has Siobhan and Richard and the support of many friends.
I worry about Siobhan and Rich though as I don't think they know just how hard it is to be on their own, fending for themselves. They don't have the support of a family like many children do, no grandparents, no aunties or uncles, none of them want to know. I think that worries me the most, I have wonderful friends who are more like family and know that they will support them, but what if that support is gone as the friends have their own lives and gradually drift away?
I want to be here forever for them, I want to shelter them from everything and I think that is what I have done up to now. Maybe it was too much love, too much care, too much sheltering? With the issues and tragedies they have been through, it is very hard not too. They have no grandparents to look up too, the only one they did look up to is in another room, watching over them everyday. I think the Tommy Cooper book Siobhan found on my dads birthday was poignant, I would like to think it was from my dad to Siobhan. I hope she can start smiling again. I was pleased to see she had taken up her pencil again and has started to create pictures. I hope it continues and she finds the strength and confidence to see that she has a wonderful talent and shouldn't waste the degree she worked so hard for. Rich has got himself into a rut, if he does go for a job, it's either "no" or they don't reply. This will make someone very despondent and give up applying for jobs. He has to pick himself up and try again, he is a great personality, he is the one who usually keeps us smiling. All we ever want is the best for our children. I hope this year they can find the path they will take for their careers. As for Kieran, he is growing up so fast. He desperately wants to be independent and I have to try and let go. He is doing well with the bus trip to his dad's and is happy to get off the bus and walk to our house. he has such a proud look on his face as he walks to the door. How long will I be able to call him my little Bean?
Well, reflection over. I will get off my butt today and get on with the life I have which is a great one. I am so lucky to have my 3 wonderful children. Long may it last.


Thursday, 13 January 2011

Wonderful friends.




I had a lovely lunch out with my friends, it was great to get together and have a natter.
When I got home I found a little belated Christmas gift. It was from my friend Gina.
It was so sweet, a coffee sachet and an after dinner mint and a little Christmas tree bauble that had some inspiring words in it. I love it as I know it comes from the heart. I was sad to have missed her as I had a gift for her, nothing like the one she gave me. Gina, you are a special lady, thank you so much x x x

Out to lunch today.

Kieran has gone off to scholl quite happily again. He did travel training yesterday which was a walk to the local shops to practice buying things and using a phone box.
I am off out to lunch today with my friends. We haven't got together for a while so it will be good to catch up.
I wish the rain would go away, we all need some sunshine, hopefully spring is around the corner and the sunshine will be with it.

Wednesday, 12 January 2011

Coffee date

I went for coffee today with Ross, we chatted for quite a long time and it was good to see her again. Ross's husband, Dave has mesothelioma and they have fought it since his diagnosis. Dave has been to America and is now seeing the Prof. I am so impressed with Ross, she is such a strong character and determined her husband will get all that he needs to allow him to spend time with her. They have a wonderful relationship.
Kieran has had another happy day at school, he is growing up so fats, his voice has nearly broken, my baby is a man : (
I felt quite heavy in my left lung last night and I have been a little wheezy. I am still tired but all in all I know I am a lot luckier than some who have the treatment.
I have been asked to go to the USA in April and talk at the ADAO conference. If I can sort out family things and finances, I will go. It will be great to meet my wonderful american warrior friends.



Monday, 10 January 2011

Another sick note.

I called my GP today to get another sick note, she has given me another 3 months off. I am hoping to go back to work at the end of it. Kieran went off to school and seems very happy. He said "see you tomorrow" as he left the house, I said "yes ok, see you tomorrow", he corrected himself and said "I mean tonight", that brought a smile to our faces.
I am feeling much better, I packed away the Christmas decs and Rich put them up into the loft.
I am hoping this year is going to be a great one for me and all my fellow warriors.
I am thinking about a gentleman I met recently. He isn't well, he has been to see the Prof and his wife said they have been told that while he is seeing the Prof he can't have support and treatment in the UK. I am disgusted at how some oncologists react. People like this gentleman have paid into the NHS system all their lives and it shouldn't matter where they get treatment, they should still have the support of a Dr in this country. I will be bringing this up at the next support meeting.
Kieran was going to go to his dads for tea tonight, he was going to get the bus but as the weather was so bad, he changed his mind. It has been raining hard all day. About time the sunshine arrived, I want to get my snowdrops growing, they need sunshine.

Saturday, 8 January 2011

Back to normal.

Kieran woke me up this morning with 2 pieces of toast for breakfast. He had made it all himself.
I have felt tired all day, we needed some shopping so Rich came with me to get it, Kieran reminded me that now he is 14 he can stay home... Siobhan is home anyway so he stayed and vacuumed the living room.
I came home and felt so wiped out I fell asleep. I am very lucky, I have no pain with the treatment, I have had a small amount of side affects, tiredness being the main one. I do wonder if taking the mistletoe just before I went helped. I was itchy and sore at the injection site which was a good sign so maybe it had helped.
I am hoping to feel better tomorrow as I want to get the Christmas decorations put away.
Kieran is with his dad tonight so that will be a little break. He will be bussing it back tomorrow, all on his own.
I am supposed to be going to Taunton on Monday for the check up on the TOF, I am going to cancel it and make it the week after if I can as I don't know how I will feel on Monday and a long train trip won't help if I feel delicate.

Friday, 7 January 2011

Night sweats.

I have had night sweats since having the treatment on Tuesday. I don't remember having them before but I must have done. I had forgotten just what a struggle it was to travel to Germany for treatment. Last time I was focused on getting the results and didn't really think about the travelling, this time, it has been a struggle. I feel for anyone having treatment who then has to travel back to the UK. It is so tiring.
I had a vaery strange dream last night, Debbie, the lady who passed away a few weeks ago, was in my dream, she was looking for a lady called Sue who she hadn't said goodbye to. Debbie was moving on and wanted to say her farewells.....so strange.
I am hoping to have a good rest over the weekend as I won't have to get up to get Kieran ready for school. I am so tired, I will chill out till he comes home, his tea is easy, potatoe waffles and fish fingers. Too tired to do anything else.

Thursday, 6 January 2011

Back home.


Rita and I arrived back home last night. She has been amazing, what a lovely friend.
It was good to see the Prof again, he asked after the meso family. I told him we had lost some wonderful people and others were poorly, he thinks the flu viruses at this time of year don't help things. He also said the mesothelioma research foundation in America are considering funding his trial. He will find out in 2 - 4 weeks, fingers crossed they say yes.
I am feeling tired and a little nauseaus today so am going to rest up this week.
I saw so many familiar faces in the theatre. Monica, Maria and the lovley African Dr who I had met when I had my treatments 2 years ago.
3 attempts where taken to get the canular in my arm. One of the Dr's who tried said they were getting a "Proffy", a professional to put it in, that is when I saw the African Dr, I have forgotten his name but it was so good to see him. I felt so at home there. This takes all the nervousness away.




Tuesday, 4 January 2011

Off to Frankfurt.

Rita picked me up at 7:45 am this morning. She is such a wonderful lady. She drove to Brirmingham and we got the flight to Frankfurt at 2:05pm. After settling into the hotel room, I realised I had left my suitcase keys at home. The hotel desk manager was brilliant and took my case to the handy man in the hotel. He returned it with the lock sawn off. They were so helpful.

We went out to eat at the Irish bar around the corner from the hotel we were staying. I had a guiness and Rita had a red wine. We had our meal and moved to the room where Rita could watch the darts match. While watching it, a tall German man with a rucksack was loitering in the area, suddenly a short Turkish man came in and started to tug at his sleeve. He seemed to be bothered by something. We couldn't understand what either man was saying. The Turkish man punched the German to the floor and was still aggitated about something. The German started to pick up a heavy wooden bar stool. The Turkish man then started to pick up a bar stool, as the German was on the floor, this was looking like a bad idea. Riat and i both shouted "No" to them, we didn't want to see this happen. The bar staff started to seperate them, just then a voice started to scream out and up popped a little German girl from the rest room area. She had a hyperdermic needle in her hand. She was screaming at the Turkish man and everyone was keeping out of her way as she had the needle. She went on for a few minutes. The police arrived and she seemed to settle after they took the needle from her. The girl and the tall Germany man were taking out, I presume they were taken to the police station. The Turkish man came back to the area with a police woman and was looking around the floor for something. It turns out that the German had taen the Turkish man's iPhone. No wonder he was upset!!!
We gave our details to the police, they were going to contact the UK police to confirm details. We were quite taken with our exciting evening, thankfully it ended without blood shed.
We had a complimentary drink from the establishment..... Phew..what a night!!


Sunday, 2 January 2011

Back to Germany.

My dad's memorial plaque at the cemetery.

I went to visit my dad's plaque yesterday, I haven't been able to go due to having the TOF op and then the bad weather. Some person had taken his and my cousins vases so I will have to get some more.
Theo and I are on our travels again. He stayed with us over christmas and new year and now it is time for him to return to Germany.
Rita, a lovely lady I met on facebook who lost her husband last year, is coming with me. i feel so lucky having so many very special people around me.
We will be leaving early and returning on Wednesday. I will miss the children and the cats but I have to do this. It has been 23 months since my last treatment with the Prof and this is not a set back. It is a small progression, the mesothelioma is nowhere near the stage it was when I went in May 2008.
I am looking forward to seeing the Prof again but would have liked to have seen him in different circumstances. He is a lovely man and I appreciate everything he is doing for me.
I did my mistletoe last night nad have had a good reaction at the injection site.
I haven't done it for a few week but was told if I stop doing it for a week or two it boosts back up.
this seems to be the case.
I may not be able to add much while I am away, I will ask Siobhan if she will update, otherwise it will be when I return on Wednesday.

Saturday, 1 January 2011

Reflecting on 2010.


Once again, some wonderful people are not coming into 2011 with us. Condolences and love sent to all of their families.

Mr Jordan - Mesothelioma (Lorraine's dad) 17th February 2010.
Ricky Hill - Mesothelioma - (Jenny's husband) 25th February 2010
Bob Wallbank - Mesothelioma - (Bridget's husband) 3rd March 2010
Mr Martin - Mesothelioma - (Mark's Granda) 8th March 2010
Reg Vaux - Mesothelioma - (Dorthy's husband) 9th March 2010
Mr Collins - Mesothelioma - 12th March 2010
Malcolm McLaren - Mesothelioma - (Punkfather) 8th April 2010
Frank - Mesothelioma- 10th April 2010
Barry Roberts - Mesothelioma - (Lyn's husband) April
Barbara Bolton - Mesothelioma - (Lesley's Mum) 26th April 2010
Barry - Mesothelioma- 2nd May 2010
Richard Connors - Mesothelioma - 7th May 2010
Jon Matthews - Mesothelioma - 14th May 2010
Sharon Lowndes - Breast cancer - (Jim's wife) 7th June 2010
Peter Ely - Mesothelioma - (Rita's husband)9th September 2010
Kevin Weston - Mesothelioma - (Jan's husband) 19th September 2010
Ted Bolton - Mesothelioma - (Julianne's dad) Novenber 2010
Max's dad - Mesothelioma - November 2010
Mr Moore - Mesothelioma - (Elizabeth's husband and Melanie's dad) 12th November 2010
Mr Ali - Mesothelioma - 14th November 2010
Peter Toms - Mesothelioma - 27th November 2010
Gary Meager - Mesothelioma - (Sarah's husband and Claire's dad) December 2010
Jennifer Jameson - Mesothelioma - December 2010
Bernard Allat - Mesothelioma - (Tina's dad) 27th December 2010
David - Mesothelioma - (Susan's husband and Julie's dad) 31st December 2010