Tuesday, 30 September 2008

Kieran home from school.

I kept Kieran home today as he had a bit of a cough yesterday. I think it is because his dad's place is a little damp.
He has been fine today. I treated him to a CD by the Jonus brothers, they are on the Disney channel and he enjoys their music, there was  a DVD for £1.75 with it.
He got this reward for being so good last week. He is going back to school tomorrow. I did try and have a snooze this afternoon but was woken abruptly by Kieran saying BOO!!
Nice one Kieran...... Good job I love you...  : )
I had my blood test this morning and will get the results next Tuesday. I had hot flushes last night and they are waking me up. I will discuss with my GP about treatments. I am not sure about HRT at the moment.
I will have my mistletoe jab tonight. I am sure that has a lot to do with how I feel and has a lot to do with the chemo symptoms being so minimal.


Monday, 29 September 2008

Out and about

I brought Kieran back home this afternoon. 
I am off out this evening with my friend, Tina.
I haven't seen her for a while and it will be good to catch up.
We are just going out for a meal. Not sure what I will have as I am still feeling nauseous. Not so much of the tired today although it may kick in tomorrow.
Kieran won't be going to school tomorrow as he has a cough. He should be better for Wednesday.
I am going to the Doctors tomorrow as I am having a hormone test because of the hot flushes I have been getting recently. 


nausea morning

I am feeling a little nauseous this morning. It isn't too bad but I am going to have something to eat as that usually clears it.
Kieran will be back tonight, he came in for a visit yesterday and it was good to see him. I have missed him so much.
He enjoyed seeing the kittens as he hadn't seen them for a few days.
They are crazy cats, they make us smile although, Cookie made Siobhan shout as she was doing up her shoe laces and Cookie decided it was playtime and caught Siobhan's hand.
I am going to have an easy day today, I have so much house work to do but I am going to take it easy as I have all week to catch up on it. The house is a mess, it will get done eventually.

Thanks to all you lovely people who have sent emails to me. I really do appreciate your support.

Sunday, 28 September 2008

Cryablation

Karryanne sent me an email from someone who has been having a procedure called Cryoablation for Mesothelioma.
It freezes the tumour around the lung.
The link below will give more information about the procedure.

http://en.wikipedia.org/wiki/Cryoablation

If you would like information from the person recieving this treatment, please email me and I will ask the person if they would give their personal experience.

Saturday, 27 September 2008

Feeling tired, sick but very happy

I took my sick note into work today. It was good to see my team mates. I had a lot of hugs and happy faces greeting me.
They are all so supportive and make going to work a gift.
I have been feeling tired today and got my head down this afternoon. Kieran is with his dad until Monday. At least that will give me some time to recuperate.
I am getting my little 5 minute talk ready for Saturday. It is the Mesothelioma UK's 3rd patient and carer day at the Queens hotel, Leeds.
I am looking forward to it.
My friend, Helen is coming with me. 
I will write a report on the events of the day. Last years event was brilliant. 
I came away feeling so positive and met a lot of wonderful people all striving for the same goal as me. 
I am hoping that the chemoembolization procedure I have had done will be considered for this country. If Professor Vogl gets his team here with their mobile unit, that would be wonderful. 
I want all Meso sufferers to benefit from this procedure.
For more info about Saturday, please copy and paste the link below.

http://www.mesothelioma.uk.com/

Friday, 26 September 2008

500th post and 33% lighter!!!!

It is the 500th post today and it is so good to have it with good news.
I got my calculations wrong yesterday. I had 18% shrinkage with 2 procedures and the 3rd one was 15% so that makes 33% not 30%.

33%

Wow....that looks good, one third gone!!!

Jeanette and I had an early start today, the hotel was beautiful,we left at 7:00am for the airport. The flight was great and Jeanette had a little panic when we landed. She couldn't find her ticket for her car. Turns out I had it all the time!!
She has been so wonderful and I am thrilled that she like the hotel.
I slept for about an hour when I got home, I made an appointment with my GP to get a sick note. I got so carried away with the diagnosis and forgot to ask him for it. I eventually got it though.
Tomorrow I will take it into work.
Some good news is the Professor Vogl and his team are interested in bringing a mobile unit to the UK. This would be so good as it would give a lot of people the oppurtunity to have what I have had.


Thursday, 25 September 2008

Another good result

Theo is doing well and loving it here. He has now removed anohter 15% of his belongings.

That means there is a 30% difference now in the size of the tumor.

I am having another procedure in October and one in November, and that should be it.

Professor Vogl's team told me that they are trying to set up a mobile treament centre from Germany to the UK for mesothelioma. This would be wonderful if it happens as there has been a big improvement in the tumor shrinking and my well being.

My worries have melted away and I am a very happy soul at the moment.

Well done Theo!!

Wednesday, 24 September 2008

Indian meal and Bier Bike


Jeanette and I had a wander around Frankfurt and found Romer, our favourite place. We stopped at an Indian resteraunt and had a lovely meal. The decor was wonderful, we felt like we were sitting in thrones

We were asked by a German man how to get to Romer and Jeanette directed him!!
She is so good at finding her bearings, unlike me.

We also saw a beer bike, What is a beer bike I here you say...... Well, it is a travelling bar that has bicycle saddles on it. One disgusted German passed us and shouted "Bier Bike!!!'...he wasn't impressed.

We loved this idea and thought there should be one or two in Plymouth.



Jeanette is sat in the hotel window at the moment trying to take a picture of the Frankfurt skyline at night. She loves the hotel and it was a good idea to choose it.

We have arrived!!

Rich didn't turn up this morning so Siobhan sorted Kieran out before going to college.
Jeanette picked me up at 7:00am and we left forBristol airport. We had a very safe journey to Frankfurt and are staying in the Radisson in Fraqnkfurt. Jeanette has had her eye on this hotel since our first visit so, I wanted to suprise her for all the help and support she has given me.
It is lovely, we are on the 13th floor (hope that isn't an omen) and have a wonderful view of te city.
We are going to have something to eat and are going to partake of the wonderful German hospitality.
We have to be up early tomorrow as my appointment with Professor Vogl is at 8:00am.

Tuesday, 23 September 2008

Better day today

Kieran has been very good this morning. He had a talking to at school yesterday and I think it has worked.
I have been getting a mild ache in my back, it may be stress or fluid. I am going to speak to Professor Vogl about it. I am feeling much better today and will be travelling to Germany tomorrow. We will have a little trip around Frankfurt when we get there and chill out. We both need it as Jeanette has been looking after her Grand daughter which she enjoys but it must be hard work.
I am off to work now and will finish packing when I get home. Rich will be with us tonight as I have to leave early on Wednesday.
It will be good to see him as he lives with his dad.
I do miss him so much but, he is a teenager and thinks he knows all about the world and we were clashing as he doesn't have a job.
I am sure he will see sense one day.

Monday, 22 September 2008

I got up early this morning as the post office had tried to deliver my mistletoe on Saturday and I was not in. I went to the PO and got it.
When I got back, Siobhan was getting ready for college and Kieran was playing with the kittens. Siobhan told him not to encourage them to jump up high for the shower switch and he went off n one of his moods. He got physically abusive to her and was asked to sit on the mat. We had cat litter all over the floor as he had thrown the sweeping brush and pan. He was asked to clean it up and then threatened me with the brush. He dug into my face when asked to put the brush down and was screaming at me not to write the incidents in his home school book.
I got him on his bus and came in and cried.
I love him to pieces but not the Autism. He is getting bigger and stronger and that is my worry.
I did say to him how dare he hit me when he knows how ill I am. I don't say anything about Theo to him but maybe that is what is needed.
Siobhan would have stayed but I told her to go as I can manage him, at the moment.
I had a weepy day yesterday at work. I have wonderful co-workers and managers who are very supportive. I will chill out now and get myself together and go to work.
I was feeling alright before, a lot better than yesterday but that has been trashed. I am sure I can compose myself and move on, no tears in work today please!

Sunday, 21 September 2008

3 days to go

I am not too bad today. The feelings I had yesterday seem to have subsided, it may be to do with having a little bit of space as Kieran stayed with his dad last night. I did my 40mg of mistletoe last night. I had a syrine from my GP that would take the full amount so I didn't have to do 2 injections last night. I am back to work today and wil finish on Teusday then off to Germany with Jeanette. She has been so brilliant in supporting me and I hope we stay friends forever.

Saturday, 20 September 2008

Tearful today

I went into the city centre with Siobhan and Kieran this morning as Kieran has got into Disney's Camp Rock. He was after the sound track. It was a little difficult with his passion for buses as he wanted to get his CD and look at buses, Siobhan was very good but I could see it was stressing her out as as well as me. We haven't had time together for a while and when Kieran is around, we find we are acommedating his obssessions.
We had lunch in a store that had windows facing the city centre bus route. We came home for a while before going out to see Kieran's friend, Stephen, and his mum, my friend, Helen.
I got very tearful as next week is looming and the terrors are kicking in. I have had a mild ache in my back which is probably to do with stress and Theo giving me the odd nudge in the back to remind me he is still around.
I am so afraid Theo has grown 15 to 18% and I will be told he has progressed further than January's diagnosis.
I will be happy if nothing has changed since the last appointment. I know I am being so stupid with these fears but, I cannot get them out of my head.
I feel very low at the moment. I am back to work tomorrow until Tuesday and I really do think I need some chill out time. It is so difficult when I am mum and dad to my family.
I am feeling so sorry for myself and I shouldn't as I have had more than a lot of people have had.
Kieran is staying with his dad tonight and will be back tomorrow night as he has school on Monday.

Friday, 19 September 2008

Chemotherapy and the menopause.

I have been having hot flushes for around 4 weeks now and have just discovered that Chemotherapy can bring on the menopause. My periods have stopped and I haven't had any mood swings. I have been feeling tired.
It is good to know why I am having hot flushes as I am the right age for the menopause anyway. That is something I didn't think I would experience.
I have added a link below with more details.

http://my.clevelandclinic.org/services/chemotherapy/hic_menopause_and_chemotherapy.aspx
Kieran's assembly was wonderful, the headmaster dressed himself up in sports gear and talked to the children about the schools name change. He wanted to know if the children wanted 'special' written in the title or not. He also got his guitar out to sing the children a song and asked one of the children to hold the words so he could read them. It would have been good enough for a pantomime. The boy looked at the audience, turned the paper upside down, back to front any way so that it wasn't in view of the headmaster. It had to be seen for the fun side of it.
I then went to lunch with my friend, Julie, which we haven't done for a while.
Kieran went to school and stayed there all day, no sickness today.
I am still trying to write a piece for patient and carer day, I can talk for Britain, funny how it isn't the same when I have to write it down!
I got a load of syringes from my Dr's today, he is so supportive. I have so much to do before going to Germany, I am not sure I will get everything done. The kittens need to go to the vets, I have to register them and sort out some treatments. I will do it all when I come back from Germany.

Assembly and coffee morning

It has been a busy few days, I did my double dose of Mistletoe on Wednesday night. I have to contact my GP for more syringes.
Yesterday the water board sorted out the leak at my house. They have been brilliant.
The leak was quite bad as the dug a hole outside my house and the water was spurting out into a spray!
had to pick Kieran up from school as he has started the 'I have been sick' trick again. He was doing it before the school holidays, I took hi to my GP to check him out and he said he was fine. He hasn't done it at all through the holidays and now it has started again. I must admit that I wasa bit annoyed as I had a day to myself to try and get the house sorted which I haven't had for a while and that didn't happen.
I have tried to explain to him that if he really is ill any time, I may not believe him.
I hope he has realised what he is doing.
Today is the first assembly I will see at his new school and thee is a coffee morning afterwards.
Kieran will be going back to school today. He was absolutley fine yesterday, He didn't show any signs of sickness, he still had the energy to play with the kittens and argue with me.
Enough said!

Tuesday, 16 September 2008

Work went well. I stayed all day as the symptoms weren't that bad afer all.
The kittens are lovely and very lively. Kieran laughs so much at their antics. Last day tomorrow for 3 days and then 3 days off. The water board will be around on Thursday to fix the laek in the pipe they discovered in May.
Not a lot else going on at the moment. Theo seems to be behaving wjich is good, I haven't heard from him for a while. It will be intersting to find out what he has been doing since July!

Fluey today

I did my mistletoe jab on Sunday night and today I have the flu symptoms. I feel very achy and tired. I am still going to work as I am only answering calls but if I do feel unwell, I know I have the support to leave.
The kittens are crazy! They were left for a few hours on their own yesterday as Siobhan is back at college and they seemed to cope.
I have had a lot of interest about the chemoembolization and am going to ask Siobhan to make a link that details the procedure and my adventure to Germany.
I am adding a link with information about chemoembolization, it says it is for liver cancer which is the procedure it is commonly used for.

http://www.radiologyinfo.org/en/info.cfm?pg=chemoembol&bhcp=1

This is the same procedure I have in Germany as Professor Vogl is trialing it.
Please email me if you want any more info at :
Phu_phita@hotmail.com

Sunday, 14 September 2008

Back to work tomorrow

Kieran has been very good today, a lot better than last weekend. We had a quiet day today, we went to see his friend which he enjoyed. 
I am doing my mistletoe jab tonight. I keep on forgetting it as I get so busy in the day and am so tired, I forget.
I am back to work tomorrow, first of my 3 days, I am off on , Thursday, Friday and Saturday this week. I am still catching up with the house work and the decorating is nearly finished....yay!



Saturday, 13 September 2008

Bus tour today

Kieran has said he has gone off trains at the moment and is into buses. So....guess what we did toay....we went on a bus tour....yay!

We went to Crownhill inPlymoth and watched buses go by. He has been very well behaved this week, better than last weekend so a bus tour was due for a reward.
We had some sad news as well. My nieghbours cat, Raffles, has passed away. He was knocked down by a car. He was a lovely cat and came into our house while his owner was on holiday. He couldn't come in when we had the kittens and I feel a bit guilty about that as my last sighting of him was when he was out in the rain and asking to come into our house. Kieran is pictured with him before a few days before we had the kittens.

Mesothelioma Statistics

I was reading a very interesting letter that was commenting on an article written in the Times about Mesothelioma, treatments and statistics.
The reply said that the Mesothelioma statistic given for the length of time somene had left to live was for populations and not individuals, so why do some oncologists still insist on telling sufferers such news when they know this.

http://www.timesonline.co.uk/tol/news/uk/health/article1844501.ece

I have included the link above which includes the letter at the bottom of the page.
Maybe it is about time that these Dr's stop telling patients that they have a certain amount of time to live and concentrate on doing all that is possible to extend lives and give the best quality of life available.

Mr Oncolgist,
Stop reading the texts book and look at the person in front of you. Support this person with as many positive comments as possible, everyone is different.
Don't tell the patient they have so many months to live when you know you don't know what they have.

Friday, 12 September 2008

1 year on

I was given 6-9 months to live in December 1996 and I am still here. Last year was a mixture of joy and sadness. I lost my lovely cat, Tigereye to the road outside and I reached a milestone with Theo.
1 year on and we have 2 beautiful new kittens, they will never take the place of Tigereye and our other cat,Patch but they will fill a void that has been empty since they passed away.
Cookie and Stork, formerly Drake, are wonderful. Cookie, the tortishell had her booster jab today.
Stork was upset as he couldn't find her. Siobhan said he was howling for her.
They get on so well, they are not brother and sister but are 2 little kitties who were in the same pen who get on really well together.
I am off to an Anne Summer's party tonight which should be a giggle. It is being hosted by my friend, Julie, so I am prepared for a really good night. : )




I went to Kieran's previous school today, We had a cabinet built for the trophies in the school as I wanted to give something back that would be useful and thank them for all thier work with Kieran. When he first started school he was at a mainstream school and could not manage it. After a lot of fighting and determination from that school and myself, he got a place at a special needs school. They have given him a lot of support and help while he has been ther and helped a lot with support at home aswell.
I spoke to a journalst today, she works for "More" magazine. She is doing an article about Mesothelioma and included my story. I am not sure when it will be published but when I hear anything I shall add it to the blog.

Thursday, 11 September 2008

Mistletoe jabs tonight

I have finished my 3 days on and will now have 3 days off. I have to do my mistletoe jabs this evening 2 x 20mg.
I can just about get around injecting once but now it is twice.
The kittens have settled in very well and have made this house their home.
Cookie has her booster injection tomorrow. I have a journalist calling tomorrow about doing a feature in a magazine. I am a bit doubious as the one in "Full house" was terible and didn't reflect my persnality or my feelings.
I will chat to her tomorrow about it.

Wednesday, 10 September 2008

One more day to go

I have done 2 of my 3 days at work. Kieran has een a lt better since he went back to school.
I am taking the female kitty to the vets on Friday for her injection. They will both have their ops in November as we don't want an kittens.
If they did have any, I would end up keeping them all and we can't do that so they will be spayed.
I had fish and chips for tea this evening, Drs orders!!!!
I get home around 8:30pm and don't always feel like cooking so it was the chip shop this evening.

Tuesday, 9 September 2008

John Sachs

I have had a message from John Sachs wife,Christine.
Her message reads:


"I am sorry to have to let you know that I lost John in the early hours of Saturday morning 6th September. I was holding him and it was calm and peaceful. No more pain or suffering now after his long courageous battle".


John did a lot to raise awareness about Mesothelioma and did a lot of charity work. He had helped raise £28,000 for Mc Millan nurses not long ago.

I had the honour of meeting John at the 2nd Mesothelioma paient and carers day last year. He was just getting over a major operation after having his lung removed.

I am sure I can say on behalf of all who visit the website that our condolenses go to Christine and his family.
Todays blog is dedicated to John.

Monday, 8 September 2008

New TV

I have got myself a new TV. It is all fitted in and it is lovely. It is a Philips Ambelight. It lights up on the back wall and changes colour depending on what is on the TV. I love it!!!
Kieran has been quite good since coming home from school. He had a little episode but nothing like the weekend outbursts. His teacher gave him a talking to and it seems to have done the trick.
I am back to work tomorrow and Mistletoe jab tonight. I have been feeling really good lately, I have found I am not so tired, I still get the breathlessness if I exert too much but it is far better than it was. I can walk a little further than I could before. I am off to Germany in a couple of weeks for the fourth treatment. I am hoping that Theo wants to take some more of his belongings with him as he seems very happy in Germany.
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Stork the kitten has just walked across the laptop and he has written a sentence that only he knows the answer to.
Kieran has gone off to school, he was a bit rushed as he got out of bed late and was insisting on finishing his toast before he got dressed.
I know I need to get sorted today but my heart isn't in it. I am back to work tomorrow, I just feel like I want to relax today and chill out.

Sunday, 7 September 2008

Kieran off again.

Kieran was abusive again ths morning and has upset me more than yesterday. I managed to get out to the shops. I have got his coat anfd a new wing mirror for my car as some bright spark kicked or hit mine off in the night.

Kieran is at school tomorrow so I will have a quiet day ctaching up on my housework. I hope Kieran is better behaved next week, I am off Friday, Saturday and Sunday.

To cap it all, Kieran came in from the garden as there was a wasp (with a shot gu the way he belted in from outside) in the garden. On his way in he bashed his big toe on the step and crunched his toe nail. It needed to be trimmed off but he wouldn't let me touch it so it was off to casualty with him to let them take a look and make sure he hadn't done too much damage.
This weekend has been a bad one. Hasn't een this bad for a long time. I feel totally stressed.
I shall be glad to get back to work!

Lazy Sunday morning?

I had quite a stressful morning yesterday. Siobhan wanted to go to a shop to get some arty items and there was no one else home to look after Kieran as I was driving her there, He would have to come with us. He was not a happy bunny as I had changed the routine. He was awful, he pushed hit, kicked and spat at me as well as the abusive tone. He carried on shouting even in the supermarket as I had to get some kitten food and cat litter. He eventually stopped when we got back home and I said I would be telling his teacher about his abuse.
We had one incident in the supemarket where I said I was going to take a trolly as I knew the cat litter was heavy. He kicked off about that and said "take a basket". I agreed as long as he carried it. He went and got a basket and went to the ailse with the cat food. He was ok till I picked up the cat litter. He went off on one again. He did carry it for a little but wouldn't listen to reason. He has lost some privelidges for this, no Disney channel or train time tables on the lap top for a week. He is such hard work at times, I was impressed at my self as I didn't break down and cry. I must be less stressed!!
He is at that age when puberty is rearing it's ugly head. Combined with the autism, it is a bad combination.
I am going to the shops this morning as I have to buy another coat for Kieran as his dad has his present one at his house and forgot to bring it back.
I will be going on my own if Siobhan is happy sitting with Kieran.
The Kittens are still wonderful and Theo, well, I had forgotten about him. He has been amazing!

Saturday, 6 September 2008

Good morning Sunshine?

The sun is trying to come out this morning. It has been raining for months. We were lucky last week as the weather was dry but it is about time the sun made an appearance.

Cookie and Stork have settled in well in their new home. Kieran was aching with laughter at them last night as they had a mad 5 minutes running around the house and attacking each other.
They have made a big difference to our house.



Heres Cookie, on my laptop, while I am trying to write my blog!

Below is a gallery of laptop cats, attention seeking kitties who want to add their own thoughts.
This is Shadow, he is a lovely cat. He moved in with us in May but has now gone missing. We do miss him and have tried to find him but up to now he has never returned. He didn't have a very good sense of direction. He came to us as he had wandered from his previous home and the owner had asked if we would like to take him on.
This is Suzanne's cat, Fluffy, he is a lovely cat as well. he obviously thinks he is being ignored.

Friday, 5 September 2008

3 days off!!!

I have finished my rotation and have 3 days off. Tomorrow Virgin edia will be fixing the phone line and I will be sorting out the washing and the house.

3rd Mesothelioma patient and carer day

I had an email from the organisers of the 3rd Mrsothelioma and patient carer day which will take place on 4 th October in Queens hotel, Leeds.
I have been asked to do a 5 minute talk abut chemoembolization and how the treatment is affecting me. I am so impressed, it is a great privelidge to be asked as last years meeting was wonderful.
I have accepted the offer and will be composing a short speech, hopefully not to boring!!!
for more info about the day and to ask for reservations, click on the link below:

http://www.mesothelioma.uk.com/

Thursday, 4 September 2008

Kieran's first day at senior school.

I have been celebrating today as Kieran started senior school today. I am so happy to be here to witness it as I was concerned I wouldn't see it.

He looked so grown up in his uniform.

I went to work today and took in Doughnuts and chocolates for my team mates.
We also have the new Kitties that moved in yesterday.

They are so beautiful, They are called Stork (formerly known as Drake!) Kieran's name for his kitten and Cookie.
I had a good time the day before as I went canoeing again with my friends in work.
It was really chilling and was such a lovely evening. STORK (formerly known as Drake)
COOKIE Becks, Pam Me and Chris

Monday, 1 September 2008

Back to the blog

I am going to get back to where I left off with the blogs. Last week was difficult as I didn't have much luck with the internet.
Today has been busy, I met up with my friend this morning, we will be back to breakfasting next week as Kieran goes back to school on Thursday.
I went to his new school today and picked up his new uniform, I have to sew his name in all the clothing now.
He has been acting up a bit, puberty I think, I am not giving in to the tantrums.
I am getting my eyebrow tatoos done tomorrow morning as I missed the appointment last week.
I also missed my mistletoe day again! I did 20mg last night and will do 40mg on Saturday. I am back to work on Wednesday and will try and get into a routine with the house.
We are being checked for the new kitties tomorrow and I hope all goes well. Siobhan will pick them up from the cats home on Wednesday if all goes well.
I have to go now and remove a spider with big boots on who is terrorising Kieran!!