I have had my hotmail account hacked, apologies to anyone who received and email virus from me. After deleting a backlog waiting to go in my drafts option and a load of failed emails, I have now sorted the problem.
This was the vision that greeted me this morning when I woke up. They were having a cuddle under the bed clothes with me. They are delightful....beautiful friends x x
I have had a break from the mistletoe injections as they weren't having a reaction. I did an injection last night and today the site of the jab is itchy and sore... woo hoo... a reaction at last.
I will be getting back into that again althougn I do think I need a boost and will be sorting that out but at the moment, not sure when.
I am going to start packing things today as Kieran and I are having a break over the half term. We are going to Tenerife for the week. I think it will be a good rest for both of us.
Kieran had parents evening last night. He is working really well. His travel training is going well too. Travel training is something the school does to teach the children with special needs how to become more independant with going to the shops,getting a bus, getting a train and all other things the average child does.
I had my annual flu jab today. It was very quick and easy and I am sure it does make a difference when I get a cold. I am hoping that fixing the fistula will make this winter even easier to deal with.
I also had an appointment with my Dr. She had 2 students in with her. She had told them about my case and warned them that when they see me they will be surprised by how well I look with all my issues going on.
She wrote me another sick note, another month off. I am waiting to hear from occupational health as they were supposed to be organising a medical to determine if I was fit enough to go back to work.
I have contacted Dr TOF's secretary, no date yet for the CT scan but she is going to talk to Dr TOF about having a scan to determine what is going on with Theo and Frederick..... for those that do not know, Theo is my mesothelioma and Frederick is my fistula. I would think that I would be having a scan in November now as next week is half term and I am going away with Kieran for the week to Tenerife. It will be lovely to spend some quality time with him.
I am off to the Dr's next week for another sick note. I can't believe how long I have been away from work. It has been a sickly year so far, Pneumonia, Chest infections and TOF.
I am hoping to get the TOF bit sorted out very soon. I have a bit of confusion at the moment. I was told I was booked in for Tuesday to have a barium swallow. I then had a phone call to say it had been cancelled as Dr TOF and his radiologist had decided that a CT scan would show the TOF and narrowing better.
Yesterday I received a letter telling me that my barium swallow had been moved from 2:30pm to 2:00pm...... Confused.com!!!!
I am hoping to have a CT scan for the TOF and for Theo, Otherwise it is going to be 2 CT scan.
I am off to Tenerife on Saturday with my friend, Tina and her son. I was hoping all would be sorted out before we went, that isn't going to happen now so will just have to be careful with what I eat.
I had a phone call from Dr TOF's secretary yesterday. I am not having a barium swallow on Tuesday now, The Dr has spoken to his radiologist and has decided a CT scan would be better.
I am wondering if a scan for Theo and Frederick (The TOF) together would be better. I will have to ask as I am due for one for Theo.
I will have to wait to find out when I will have the CT scan and will ask if it could be combined and sent to Dr Meso.... this is what I shall call my oncologist now.... it gets so confusing with all these wonderful Dr's.
I was hoping to get it all sorted out before next week as I am going to Tenerife for a week with my friend, Tina and her son, Kieran is going too.
I will have to be very careful when I am there and may come back a few pounds lighter, although, I never stick on chocolate!!! That can't be a bad thing : )
I was up at 6 this morning and out by 6:55am to got to the radio station. It is a beautiful day so the drive to the studio was lovely.
I did 2 shows, one with Gordon Sparks and one with Matt Woodley. I was asked about how I felt when I got the good news that my meso had reduced. Matt wanted to know because the Chilean miners had started to be lifted from the mine they are trapped in. I explained that I felt like it had happened to someone else. It has to have been one of the best moments in my life.
When I got home, Kieran was ready for school and was making his own breakfast. He also put some clothes in the tumble dryer and more clothes in the washing machine. He is saving up to get a game and is earning money by doing little chores. I don't think it is a bad idea to teach him how to work the house hold appliances.
Good luck to all the Chilean miners, after 2 months of being trapped, they are being released 1 by 1. There are 33 miners to lift out of the mine.
A snowdrop patch, taken in Australia by Ria, one of our Mesothelioma cousins. The snowdrop is the symbol of hope for all Mesothelioma victims.
I went to see the specialist nurse who is arranging the first mesothelioma support meeting in Drriford hospital tomorrow.
I was all set up for the local paper to come over and take some pictures for an article. That idea has changed, she wants to wait until the group os established before publicising it.
I was a little disappointed but I know that having the support group is far more important and I am excited about that.
I am still going to do the radio show in the morning on BBC radio Devon at 7:30am with Gordon Sparks and then a slot with Matt Woodley at 8:00am.
It will give it a little publicity. The specialist nurse also mentioned that it might be a good idea to include those who's family member has passed away as they need support too.
I think that is a great idea, why should it all stop when someone is lost?
They will meet others in the same position.
It has been another lovely day, I am still feeling very huggy today, I would like to think it is my dad and my uncle surrounding me with love and comfort, Not often that I feel so protected. If it is you two, thank you, it is a perfect hug x x x x
It was a lovely afternoon today, beautiful sunshine. I went on my own to Taunton, no need to drag Siobhan along too as it was only a consultation.
I asked Dr TOF about pleural plaque which showed up on my last report. He said it is there, I am not concerned as I know that it isn't life threatening like the meso.
He also said he didn't think the fistula was closed properly. He said I would definitely need one or more dilatations as the stricture (narrowing of the oesophagus) was quite bad and doing it fuller could damage it more and then it could be risky or even life threatening. He is taking things very slowly.
I will be having a barium swallow next week followed by a general anesthetic to clip the fistula again and do the dilatation.
I am happy with what Dr TOF is doing. I was so pleased to hear him say that I would be in a medical journal, well my oesophagus and fistula will be, as I am the first in the UK to have this procedure and the second in the world.
Tomorrow I am going to the mustard tree to speak to the specialist nurse who is organising the mesothelioma support group in Derriford hospital. We will be doing a radio broadcast on Wednesday morning and then the support group at 11:30am at the mustard tree. We will be having the local paper there also. It should be a good day : )
The sun is shining, it is like a summer day and I am off to Taunton on the train.
I am going to see Dr Tof, I think he will say I need another dilatation as I am still sticking when eating food.
I think we may have solved the TOF problem , well I am hoping, I had some alcoholic beverages in London the night before the meeting. I forgot that usually I have a sore throat and lose my voice a little.
That didn't happen and I said my little piece with no problems. By golly, I think he may actually have done it!!!
Our little group on facebook s busy organising a 2012 calendar, there are a lot of ideas being thrown in the ring so it is looking good. We want it to be international as asbestos is a world wide problem. We also want to get the word out there about how to deal with asbestos if anyone was renovating their house.
We will see what happens with it. Any photographers who want to take part, please get in touch
I had a phone call from my bank today. I was sure it was them, they asked me to press buttons to confirm information.
There were 4 transactions the automated system read out. One of them I didn't recognise, it turns out someone had tried to top up their 02 phone with my card details. I work for Orange so don't have an 02 account.
I spoke to the agent who told me there was a new card on the way and now I have to wait till 15th October because of some pilfering little pain in the bum, cheeky little B*****ds!!!
Kieran came into my room and told me he could smell poo..... that means only one thing, Amber has been doing her business outside of the cat box, lovely....just what I need at 4am!!!
I went into Kieran's room and it was high with the smell, Rich, being the man of the house, rolled over and hid under the covers....what a hero!!!
We eventually found it....all over Kieran's duvet.
It was easily solved as she had only just done it. I took the duvet cover off and put it in the machine to wash, I then got some air freshener as little kitty cats don't leave pretty kitty smells after they have done poos!!
Poor Stork was very frightened of the spray and he man Rich......... he was still under the covers... : )
I have had my first night sweats for a long time so as Kieran came in my room, I was almost awake anyway. I am off to see Dr TOF on Monday about the fistula and think I may need another dilatation ( Stretch the oesophagus) as food is still a bit sticky.
I had a lovely meal at my friend, Tina's last night. Started with Melon and had Omelette and rice for mains followed by chocolate fudge cake.
All soft-ish food, I have to say that Tina had chips and they looked good enough to eat... : )
I didn't want a moment so didn't try one, it will be sorted soon, there are worse things in the world than not being able to have a chip butty!!!
Kieran is home today and it will be great to see him. I have missed him, I think he might play the "I'm too tired for school" card tomorrow morning but he will be going. He doesn't get home till late but when he goes to bed late he manages to get up for school.
Number one son still doesn't have a job, Rich has been out for work for a long time and has no insentive to get a job.
Tomorrow i am meeting a friend I used to live next door to. We met up after 10 years a few weeks ago and it was like we never had the years in between.
She is a very brave lady, she has a kidney complaint and has to have fluid pumped into her abdomen, She does this a few times a day, at home.
I find it very humbling.
I rang my local MP today about the coffee morning next week at the mustard tree. She is in parliment on a Wednesday but her assistant said she was very interested in coming along.
Good luck to all the warriors in Frankfurt this week.
I hope you all get a good result, I Wish I had a magic wand and could get rid of cancer for ever. The first one to go would be Mesothelioma.
The weekend has been one of the best I have ever had. I was very excited about meeting the warriors and also about seeing Prof Vogl again as the last time I saw him was June 2009.
I went with my friend, Gina, on the train from Plymouth to Paddington. We met William and Ann at the station, William has meso.
We met Rita at Exeter and chatted away for the duration of the journey.
We all shared a taxi to the hotel and went off to our rooms.
In the evening Gina and I met more warriors. We met Alan, Paul, Jan, Ronnie to name but a few.
Jan, Rita, Gina, Ronnie and her husband Robert, met up with Barry and Helen in the pub for something to eat.
It was so lovely to chat to all these wonderful people who I had only seen as words and pictures.
We got back to the hotel and met a few more, Heather and Alan who had been a great support to me, Mike and his wife, we spent the evening chatting amongst are selves and getting ready for the next day.
I was so excited, Gina and I were ready to meet the rest of the warriors. The meeting was great, I can only describe it as patient power. The were wonderful. Every one had their chance to ask questions. The speakers were amazing, Prof Vogl was excellent. He made everyone laugh with the short video of a lady holding a dog lead and then disappearing of the screen.
This made the room roar with laughter.
I will be adding the Prof's talk if he says it is ok to do so. Dr Orange from Park Attwood was wonderful too, he talked about Mistletoe treatment. I don't think he got enough time to add all the information but it was great to see him again. Mavis was another patient talker, she hadn't done it before and did very well.
Graham Sherlock-Brown spoke about his survival of 8 years.
All together it was a very well organised day.
Liz, Dawn, Jill, Dr Steele and Dr Edwards did a great job of organising the event and were overwhelmed by the response to this event.
I personally think a lot of people wanted to see the Prof and the awareness around mesothelioma seems to be more.
Everything is packed, speech ready, hope I haven't forgotten anything.
If I have its too late now.
I am picking up my friend, Gina, and meeting Rita on the train. Sure we will have lots to talk about.
I am looking forward to meeting the lovely friends who I have met on facebook and meeting friends I have known before.
It is pouring with rain, I am not worried, I am excited to be going to the conference. It has been very popular this year, people have been turned away, such a shame because it is important for them to go.
Maybe next year will have a bigger venue.
Will blog throughout the weekend and add pictures. I will be taking my camcorder to film the event and will add it to the internet for those who are unable to attend but are interested in the speakers.