Saturday, 31 May 2008

Good day today

I did my 10 hours today and got through it. I got a little tired within the last hour but all in all it was a good day.
I didn't get the sickness today which was good. After work Chris and I went out to have a drink with our team mate Valerie, who has left Orange where we work.

She is going back to Ghana and we will miss her and her friend, Kojo as Chris and I have worked with Valerie since we started.

I am pictured with Valerie and Kojo and I know I can say on behalf of all the people that have worked with Valerie that she will be missed. She has the most wonderful smile and has such a great sense of humour. We have all gained a good friend and Chris and I have gained a holiday home in Ghana!!!
I forgot to do my Mistletoe jab last night as I was so tired but will do it tonight. I will mention this to Dr Maria when I speak to her. Last day tomorrow and then 3 days off. I will see Kieran tomorrow which is always good to look forward to as he has stayed with his dad for the weekend.

Friday, 30 May 2008

First one over

I have done my first day at work since coming back from Germany. I wasn't all that well this morning and ended up signing off to go to the toilet. Later in the afternoon it got easier.
I did my 10:00am till 8:00pm shift with great support from my colleagues and manager.
My problem is I don't want to be beaten but I have to slow down. I am so afraid that if i stand still too long, It will get me.
I have spoken to my manager and asked him if I can do 2:00pm till 8:00pm until I have finished the treatments in Germany and will find out next week if that is possible.
I don't want to stop work but i know that I have limits.
Theo has been very quiet and doesn't bother me at all which is good.
I feel really well in myself which maybe due to my supplements.
I have another jab of Mistletoe this evening which is also good for boosting the immune system. 
I know I am losing more weight due to the sickness but hope to add more with Dr Callebout's regime.

Back to work

I am going back to work today. I have upped my flaxseed intake as I have been taking 3 tablespoons in Orange juice in the morning, that is now 4 each day as reccomended by Dr Callebut. I have also started having manuka honey on toast as manuka honey has an active bio ingredient and unfortunately does cost a whopping £18.00 for a small jar .... Ouch!!!
I will take my nausea drops with me today as I am working from 10:00am until 8:00pm.

Thursday, 29 May 2008

Dr Callebout

I recieved my long awaited information from Dr Callebout this morning and it is quite detailed. More injections, coffee enemas, supplements and the results of the blood test that I will need help deciferring.
I will add the information to the blog when I have read it completely.
I have to purchase a pod for the hyperthermia as cancer doesn't do well with heat. The pod will heat the body to 39 degrees and that helps to kill off the nasty cells.
I had a sleep this afternoon and ended up taking my drops for nausea as it has come back today. I am back to work tomorrow and will take them with me as they work really quickly.

Feeling good

We got home quite late last night after going to the cinema but it was great to see Kieran with his friends. I was worried in January that I would not see him go to his senior school in September, but with all this positive information and treatment, It looks like I will be here. I am so glad I didn't opt for the Chemo back in 2006 as it would have stolen all that I have had since then.
These moments are precious and this disease is something that no one should be suffering.

I am also glad that I went for a second opinion as not all patients realize they have the right to refuse treatment if they don't want it. I am going to revert to my special website that was so helpful to me when I was first diagnosed. www.thefurrymonkey.co.uk , Karen is wonderful, she has non-Hodgkin's lymphoma and created a great site that also includes patients rights.
Not sure what is happening today and I will be back to work tomorrow. I was fine yesterday, no sickness, which was good so looks like it lasts about a week as Dawn said.

Problems with the water works!

Apparently, there is a leak in the water pipes that run into my house. Work men have dug up the path outside and refilled it and told me that I will have to pay to get it fixed. Thay are trying to say that renovations on the garden have caused the problem. Our water pressure was absolutly fine and now they have finished playing with mud, my water pressure is so low that we cannot even have a shower.

They have gone away and left us with this and I don't know what to do. James the handy man has said he will come over and take a look, he is so good. I am doing nothing until I have more information.

I spoke to Dr Maria today and she is happy with the way things are going and also took interest in the Chemoembolization I have had done in Germany. I told her I would let her know on my next phone consultation if there was a result with the treatment. If there is a 1% change I will be happy as Theo will have to grow that extra 1% again and that will give me more time with my family. 
On a happier note, Kieran and I went into the city centre today and had lunch and Kieran read his favourite magazine, Inside soap and told me all the dirty stuff that will be happening in the coming weeks.

It was good to spend some quality time with him. We then went and picked up the new laptop, it was replaced as the one I had got damaged.


This evening I went to the cinema with Kieran and his friend and family to see the new Indiana Jones movie. Helen is Kieran's friends mum and we have become very good friends because of the boys. We didn't get back until late but we did enjoy the film.

Wednesday, 28 May 2008

Good morning













The symptoms were not as bad yesterday as they have been. I got a little queezy late in the afternoon, probably because I need to slow down and I am trying to do all I had done before. I had a carpet delivered by te lovely James yesterday, James has his own business and is a my friends fiancee's son-in-law and he has been an absolute star.

He has got the gardens renovated, sorted out the living room area, decorated and carpeted Siobhan's room and has brought in the carpet to be fitted in the living room. That will be done on Friday so the house is still a shambles.


This is such a big commitment and without James' help, It would have been worse I am sure.

My son, Rich, helped knock down the original wall and we took some heres Johnny shots.
I am going to hopefuly see my friend, Helen, today and may take Kieran to see the new Indiana Jones movie. I will have to see how I feel as when the nausea kicks in it wants to be dealt with immediatly.
Theo (my tumour) has been very quiet and Jeannette did advise him that we could drop him off at his name sake street, Theodore Stern Kia 7, which is, coincidently, the address of the univercity clinic where Professor Vogl is based.



I am going ask Siobhan to upload the CT images she can add them to the website. It will be interesting to see the changes, and hopefully there will be some. Professor Vogl was very keen for the images to be added and is a very keen supported of my website.

Tuesday, 27 May 2008

all well at the moment

I am feeling quite well this morning. I am hoping the nausea will wear off soon.
I have to take my mistletoe injection tonight and will call Dr Maria tomorrow about the mistletoe treatment.

Not sure what is planned for today. I may visit my sister later as I haven't seen her for a week or more.
I bought her some magnets from St Ives, Germany and Princeton on Dartmoor, Plymouth. She collects them and I am suprised her fridge can still stand under the weight!


I am adding a little picture that was sent to me as the funny picture of my son having his hair cut went down so well on the site.

I wanted to include this lighthearted picture as it is sooooo sweet.

Monday, 26 May 2008

Not well today

I didn't go into work today as I am still feeling nauseaus. I slept for most of the day which I think I must need. My little bean came home , it was good to see Kieran as he has been away for 9 days. The sickness is different to the usual nausea I have experienced.
I am also trying to follow the diet that Dr Callebout sentbut it seems as if there is nothing I am allowed. The nausea has spoilt my appetite but I know I need to get my nutritional values.
I hope so much that this will be worth it. I shouldn't complain as there are many people who would want to try what I am doing. I am trying so hard not to complain but it is coming out all wrong.
If the CT scan next month shows a change it will be wonderful, the smallest change in the size will be worth all the sichness but I can't afford to lose any more weight as my oncologist will not like it.

Sunday, 25 May 2008

Home from work

I went to work this morning but ended up coming home after I felt lightheaded and nauseaus.
I have a very understanding boos who was happy to let me go home. I am going to go back to work on Friday as I think I need to give myself some time to adjust.
I have taken some medicinal drops prescribed to me by Professor Vogl and they seem to work very well. I will have to translate the paper work as it is all in German and I am not sure how many times a day I can take them.
Shadow has still not returned home, I think we may have lost him which os a shame as he was settling in quite nicely.
Siobhan said he was crying quite a lot when I left for Germany so he may have missed me or it could be to do with the house not in order as we still have no living room with furnishings. No sofa or table and chairs.
I will get that when the carpet is down which should be next week.

Saturday, 24 May 2008

Seen my little bean

I went into to town for lunch with my daughter,Siobhan, where we met up with Kieran, My little bean, with his dad. We had lunch together and then went our seperate ways. Kieran will be home on Monday.
Siobhan and I had some fun looking around the charity shops as we find some good bargains in them. She bought a T-shirt that she said was so bad it was good.
We went to Hotel Chocolat which is like a Thortons shop, they sell 100% dark chocolate, Dr Callebout has reccommended this at 4:00pm if it is something that is enjoyed now and again.
His diet is very regimented but I will get myself into a routine with it shortly.
Tomorrow I will be going back to work as I feel very well in myself.
I am looking forward to seeing my team mates again.

No work today

I have decided to give myself some time before returning to work. I have been feeling light headed and tired, a tired I have not experienced before, and I will return tomorrow all being well. I feel very lucky having such an understanding boss who has been very supportive, very much like the others in the centre that I have worked with.
It makes things a whole lot easier.
I am going to see my little boy today, I haven't seen him for over a week and have missed him so much.
Shadow is still nowhere to be seen and that is a shame as we really love him and miss him too.
He may well turn up and hopefully soon. I will try the usual cat homes and see if he has turned up. He has a chip but I would have thought he would have been scanned if he went to a cats home.
We will wait and hope that he does return.

The house is still a mess, just waiting for carpets to go down in the living room and Siobhan's bedroom, That won't be done until next week. Kieran is back on Monday and it is going to be difficult.
I am sure we will cope though, we will have too!

Friday, 23 May 2008

No Shadow

Shadow, our cat, has gone missing again.
He is hopefully tucked up warm and cosy with someone else. The house has been in uproar due to the decorating and my going to Germany so that may be why he has felt the need to go on another adventure.
I took my mistletoe injection this evening and am going to ring work tomorrow as Ithink I should give myself at least one day clear to rest.
I fell asleep this afternoon which seems to have done me some good, I can feel a little nausea but apart from that, there has been nothing dramatic with the procedure.
I will be returning on 20th June for the second treatmnet and also to start the Dentritic cell vaccine.
I had a lovely messge left on the board this evening from a lady who lost her husband in April.
Trixie bell has her own website.

http://www.sunny-disposition.net/


This site is dedicated to all those families who have or are dealing with Mesothelioma and if it brings information together and helps us all support each other then it has done what I wanted it to do.
This is your site, you see what you want to see on it.

Back home

Jeannette and I were up at 5:00am and went for breakfast early as our taxi was to pick us up at 6:00am.
We had our breakfast and waited for the taxi which didn't turn up at the time agreed.
After 3 phone calls and a threat to cancel it arrived. The operator at the taxi rank had told us our flight had changed from 9:05am to 9:25am which was not true as he wanted to justify arriving at 7:00am. This was not good enough so the threat went well and they arrived at 6:25am, 25 minutes later than agreed.
I am terrible with passports and tickets, I like everything to be under control, my stress levels were rising by now but with Jeannette with me to keep me calm, I survived it.

We made it back to Bristol and it was a good flight. When I got in doors I was greeted with a hug from Siobhan and a letter from the family tax credit agency....yippee....we have been over charged again.
I was very upset to be greeted with this as it was not the time to deal with it. Apparently we owed them over £1000 and they wanted it back although they had already put over £2000 in my bank the week before.
They are crazy, it was because Kieran's dad and I are now divorced and it is 2 seperate claims.
I don't think this department realises how much it screws up peoples minds with stresses like this.
I am now going to try and destress and chill out. I was going to return to work tomorrow but I might just give myself 1 more day as I feel so tired.

Thursday, 22 May 2008

Sleepy time

After coming back from our little bus tour of Frankfurt, we had a little snack in our room and I went off to sleep for.....6 hours!!!
I couldn't beleive it when I woke up at 10:00pm this evening.
We went down to the foyer to see if we could get something to eat and we had just made it, to the annoyance of the waiter on patrol. He was ok though and got us an omelette each and a beer. The german beer is lovely.
We then came back to our room and packed ready to get on our flight tomorrow. We will be leaving at 6:00am as the flight is at 9:05am. We will be back in the uk at around 10:00am.
This has been a good trip, the treatment has been pain free and I know what to expect next time.
Dawn Hughes has been a great support and without her help, we would have been lost as to where everything is. We found a hotel very close to the airport and university clinic.
Dawn will have her treament in a couple of weeks and I really hope all goes well for her.

Tour of Frankfurt

Jeannette and I slept until 10:00am, I managed to get back to sleep ok. We went down for breakfast. It is a bank holiday in Germany today so a lot of the shops are closed, we are taking advantage of a trip offered by the hotel, a tour of Frankfurt.
We both have an interest in culture and architecture and the architecture in Germany is beautiful.
I have got no ill affects from the procedure yesterday and no pain!
I will take the pain killing drops with me (they were prescribed by Professor Vogl) just in case I feel any pain or discomfort.

can't sleep

I woke up this morning around 5:30am Gemran time, 4:30 am UK and went down to the hotel lobby to get a cup of tea. When I came back, I took off the turnique and realxed a little before trying to get back to sleep. Not sure if it was the turnique or me that made me feel restless. I will try and sleep, hopefully removing it would have worked.

Wednesday, 21 May 2008

Been and done it.

Jeannette and I had breakfast and then got ready for the taxi. We left the hotel and made our way to the University Clinic. We were told to go to the baking part of the clinic to pay for the treatment (they like the money first) We then waited until my name was called and went through to an area where I removed my clothing and out on a gown. From there we were taken to the theatre were the procedure would be performed. At this point I got a little tearful as the reality of what has happened to me and the anger manifests itself. I had a shunt put in for emergencies and was shaved at the groin region as this was were the operation site would be.
Professor Vogl entered and was very comforting, discussing all my qualifications and what job I did. This took my mind off the needle going into the groin and administering the anesthetic. The items needed were inserted and then the catheter, I didn't feel a thing! It was over in seconds. Jeannette watched the process on the screen and was taken back by it.
The needles/shunts were removed and pressure was put on the site in the groin, this was the most painful part. There was a flutter of activity as I was shivering and a rash had appeared on my chest. Apparently I was allergic to the contrast dye that was used. I felt absolutely fine but knew I was in good hands if anything did happen.
I was then bandaged with a tourniquet very tightly around the top of the leg which has a big pressure pad on the groin area.
I rested for 4 hours and went for another CT scan to make sure all was in the right place. I got dressed and went To Professor Vogl's office and picked up my papers and CD he promised for the website.
I met a lady called Erna in the next bed who spoke very good English and have said I would like to keep in touch with her. Erna (Ernie) has liver cancer.

When having the shunt for emergencies put in my arm, I met a nurse/doctor who asked me if I had been before as he thought he recognised me. He thought I was Dawn Hughes.
Dawn has her own Website ( http://www.wigstowishes.blogspot.com/ ) and was featured on a programme called the mummy diaries which was a wonderful programme by channel 4. Dawn has been so helpful with advice about this treatment and I would like to thank her and wish her well with her treatment as she will be having her 4th treatment in June.
Thanks again to Jeannette who has been invaluable. She has been a great support to me.

Todays the day

It has arrived. The day I have been anticipating, I don't feel nervous at the moment but I am sure that will change.
I feel so lucky to have Jeannette here as she is such a great support to me, as are all my friends.
I will be putting myself in the hands of Professor Vogl and I a happy with that as he knows what he is doing.
The procedure will take place at 2:00pm German time (1:00pm UK) .

A small incision will be made to expose the artery that feeds the tumour which is in the femour. A cathetar is inserted and pushed up into the area affected. Embolization is a glue like substance which is put in to seal off the tumour and the chemo is then added and the whole area sealed off. The chemo is left to do its job.
It is something like having a room with 2 doors, sealing off the back door and throwing in an explosive and sealing up the front door.

It sounds really simple, the Professor (who specialises in this treatment) has a very difficult job as he has to be very precise. I trust him as he comes across very confident that this will work.
I will write some more when I return.

Tuesday, 20 May 2008

Meeting Professor Vogl

Jeannette and I got to the clinic in plenty of time. We went to the reception and booked in. I went off to have the CT scan done which was quite nervy. I am not klaustrophobic but I didn't like being jammed in the machine with metal on top of me which was strapped to the table, an alarm for emergencies and headphones to listen to instructions.
The process took about 15 minutes to complete.
I got dressed and went to see Professor Vogl's secretary who directed us to the waiting room.

From there we went to his office and waited for him. He arrived and introduced himself. He did ask who the patient was as he said Jeannette and I looked too healthy.
He explained the MRI x-rays and said he could perform the Chemoembolization, I was so afraid he was going to say he couldn't do it. He also said that I had to have a long life as I was now one of his statistics! He doesn't get many Mesothelioma patients, maybe 5 -7 a year and that is from all over the world. He also told us that this was a trial. He said I could have pictures from the X-ray to add to the website and he would point out what was relevant which was brilliant.
He asked Jeannette if she wanted to come into the treatment tomorrow and she agreed to it.
We went off and celebrated with a lovely lunch and a German beer. I feel like it is Christmas!!


Apparently it is a German bank holiday tomorrow.
Foot note: Just a quick congratulations to the 5 students who made a short film about Mesothelioma, they have been entered into the Soho film festival.
Good luck Claire, Nick and the guys, Hope you do it !!!!

Good morning from Germany

Well....it has arrived...the day I have anticipated since last week. I will be seeing Professor Thomas Vogl at the University Clinic in Frankfurt at 12:00pm. I am intersested in what he will say and also what the success rate is.
My friend, Jeannette has been so thoughtful and supportive, I think she knows how much I appreciate it.
I will put in another blog later on, for now, I am going to have a shower and breakfast.

Monday, 19 May 2008

We have landed!!

I got up early this morning and sorted out all my packing and passports (did the checks again!) I met Jeannette at 7:15am and we made our way to Bristol airport. We booked ourselves in and went to look around the shops, we went to check in and heard that our flight would be delayed so we took advantage of a cuppa while we waited.
Soon the tannoy announced our flight was ready, we were so excited. We boarded and it wasn't long before we were off.
The journey was very smooth, we had a connecting taxi to the hotel which was also very smooth.

( the taxi driver looked very much like Jim, the travel agent - Jim said he was his cousin Fritz... : )

We booked in and knew we were going to have a problem with the language. We didn't have to worry because the locals are very good with their English...better than my German!!
I called the clinic to ask the address and booked a taxi to take us.
It is the university hospital and my appointment is at 12:00pm tomorrow.
I am looking forward to meeting Professor Vogl and finding out more about the procedures.

Jeannette and I ventured out into the big wide world not knowing where we were heading. We ended uo in what I think is the red light district!!
Lots of shops offering all sorts of goodies for lonely people...oooerr!!
We got lost coming back to the hotel as a local had directed us on the wrong tram. We did eventually get back to the hotel and had a lovely shower and settled down for the night.

Sunday, 18 May 2008

nerves kicking in

The usual nerves about the passports and tickets has started. I have this every time I travel.My stresses were enhanced by the dates being wrong for the taxi pick up from the clinic to the airport in Germany to return to Bristol. The dates said 26th May and I was hoping that the tickets hadn't been added with the same date.
I had no worries as Jim and Sandra had once again surpassed themselves with all my requirementas within days. They are so wonderful and have organised every trip we have had.
The taxi problem is not their fault it was the fault of the taxi firm.


I am also very nervous about the treatment. I really want this to work as I don't have much available to me. It will also be a great help to other Mesothelioma sufferers if it works as it will give them the hope they were looking for.
I would love it if Theo (my tumour) told me he had met a fräulein and couldn't be with me anymore. I wouldn't mind if he wanted to stay in Germany. He could set up home with his fräulein. How good would that be for both of us!

My lovely friend Jeannette has said she will drive to Bristol and I am sure we will have a great time. I just hope and wish this works. If it only shrinks a little it will be a benefit.
I looked a at a picture of my babies tonight and had tears rolling down my cheeks as I hope so much this works for their sake. I don't want them to be motherless as they have so much more to discover and I want to be there when they find it. I don't want this cruel disease to rip my family apart like it has done to so many others. I want this treatment to be a success and I want to help others in my position. We need something to hope for and this may be it.


4 returning to Devon

We all got ourselves sorted out and packed ready for our return to Plymouth.
We have had a really good weekend, I got gifts for my children and some things for myself.
The hotel we stayed is was lovely and the proprietors were very helpful. We had a lovely breakfast each morning and the rooms were perfect.
It is called the Skidden house hotel and is a 16th century building set beside the sea. It is so beautiful, well worth a return visit. I would highly reccommend it.

http://www.chycor.co.uk/hotels/skidden/page2.htm

We left the Hotel at around 11.30 ish and made our way back to Plymouth in good time. Julie was the driver and dropped us all to our destinations. Thanks Jules, you have been a star.
I got it to find the living room wall had been painted and my daughters bedroom plastered, excellent.

Saturday, 17 May 2008

Back home tomorrow

I wasn't very well this morning, I took my mistletoe last night and with the combination of my monthly visitor (period) and the meal last night, I managed to pebble dash the toiulet wall. I did clean it up though!
After I got my self together we all went into the town centre and had some retail therapy. We had the cream tea Tina had been wanting for so long and it was lovely. We had a really lovely afternoon. We went to a little place called the pepper pizza bar which was far superior to the awful bistro we went to the night before.

We then went on to a little club and enjoyed the abiance of a morroccon bar. It was decorated wth wonderful lamp shades and colours. Such a lovely little place. We stayed there for quite a while before returning back to our hotel.
Julie found the manager of the awful bistro and tried to get our money back to no avail...she even told him it had made my hair fall out!!
We had a fantastic night. We will be coming back again.
We will all be going back to our normal routines tomorrow. It has been good to enjoy some quality time with my friends. They are special people andthese are just 3 of them. There are many more!!! Thankyou for a great weekend girls...and guess what....we are still speaking to each other!


Friday, 16 May 2008

Four go mad in Cornwall!

I got my self sorted out and posted all the letters that needed to be done. I picked Tina up and brought her back to my house were we waited for Helen.
Helen and her husband , Adrian, picked us up and took us to Julie’s house and then the adventure began.
The weather was quite good when we left Plymouth and about half way through our journey, It tipped down with rain.
When we got to St Ives, it was good again. Apparently the rain had travelled to Plymouth.
The Hotel is beautiful. It is so quaint and the hoteliers and Tina had the big room, Their bathroom is enormous!
Helen and I, being the quiet ones, settled for the smaller room.
We went for a walk and got some lunch in a lovely little café, good job we had a big meal as the evening meal was awful. We had some concoction of rice, peas, and saffron which was supposed to be a risotto but was in disguise as a lump of gunk. The art work was terrible, by someone called Fox who seemed to like to display his depression for all to see. We won’t be going back there again!!
We had a wonder near the sea and bought an ice cream each, it was lovely. I am making the most of it as Dr Callebout’s diet does not include cows dairy.
We walked back to the hotel and settled down ready for our next day out.
Tomorrow we will be having a cream tea as Tina has a craving for one.


We had a good day apart from the meal.

As I was going to St Ives......

As I was going to St. Ives
I met a man with seven wives.
Each wife had seven sacks,
Each sack had seven cats,Each cat had seven kits;
Kits, cats, sacks and wives,
How many were going to St. Ives?

This is an old riddle and I probably won't be meeting any man while I am going to St Ives.....

I am getting packed and ready to go with my friends Julie Helen and Tina.

I didn't realise when I arranged this that I was doing Germany as well.

I found out why I felt so unwell yesterday My period has started. The Mistletoe and my menopause do not like each other.


Trust me to have a pick 'n' mix of illnesses!




I will be taking my laptop with me so will be adding blogs while I am away but Germany is going to be different. I am not sure if there will be any internet ports out there so the blog will be done when I return and I will add it underneath the Mistletoe diaries button.


Thursday, 15 May 2008

Kieran's train adventure

My friend Becks has a friend, Lyn, who works for British rail and she very kindly arranged for Kieran, my son, to have a tour of Plymouth railway station. Kieran had been looking forward to it and I was worried that I wouldn't be able to take him as I felt so yuk and sleepy.
I had something to eat and drink and the nausea went away.
Kieran arrived home from school and was very excited. We went to the Station and was surprised to find that he was being given a go on the simulator the train drivers use when they are learning. It was brilliant, he reeled off all the stations and amazed the guy with him.
He was also given a whistle and was asked if he wanted to blow his whistle for the train to go and he said yes.
He gave the passengers of 2 trains the warning that the train would be leaving soon and blew his whistle again for them to go.
He really enjoyed himself, it was lovely to see him smile.






I would like to thank The staff at British rail and Lyn for giving Kieran the chance to see the simulator and to blow the whistle for the trains. He loved it. I really appreciate the time put in to entertain him and how he was made to feel so special.

Mistletoe kicking in

I went out to my travel agent, Jim, this morning and arranged the travel deatils for Jeannette and I for Monday.
My misteltoe is having a battle with Theo (My Cancer) I am sure.
I feel nauseous again and lightheaded which are the symptoms that happen when the mistletoe needs to do its job.
I have so much to do to day which is not going to be done. I hope it stops by tomorrow as I am going away to St Ives.
Kieran is going away with his Dad this evening, he is visisting relatives until Tuesday, that is why I arranged a little "me time" with my friends.
The insurance company should be ringing me about the Apple laptop to see if I can claim back for a new one ( My eldest son, Richard, spilt water on it.

The insurance guy rang this afternoon and he say "yes". I will be getting a new apple mac book and the damaged one I don't have to return. I will get a friend to have a look at it and if he can get it working, Kieran can have it for looking at train timetables.

Wednesday, 14 May 2008

Positive times

I am so pleased with the email from Germany this morning and I feel like I have won the lottery. I am not expecting miracles but if I can reduce the cancer a little to give me more time with my family, the trip to Germany will be worth it.
I have added the link to the German website below.

http://www.leonardisclinic.com/32.html

I have had a lot of great support in work to the point that my friend, Jeannette, has been allowed 2 days off to travel to Germany with me. She is so wonderful and I really appreciate what she is doing.
I am going to St Ives with friends on Friday and till Sunday and off to Germany on Monday.
This is going to be 1 busy week.
Also, I have recieved 2 lovely emails from people/families dealing with Mesothelioma who have found the blogs very helpful.

This is what it is all about, sharing information and getting it to the people who need it.

It makes the website all worth while.

Professor Vogl

I have heard from Germany. Professor Vogl as asked if I would like to go to his clinic on Tueday 20th May for checks and scans and have the treatment done on Wednesday. Ihave agreed now all I have to do is sort out the flights!!!
I am so excited, I am hoping this treatment does show the tumour changing, hopefully shrinking.

Tuesday, 13 May 2008

Tired after work

I have had a good day in work but I feel so tired today, I am trying to juggle sorting out the house with work and family and it is so difficult.
I am also very much aware of the swollen lumps that I think are the lymph nodes and am determined not to speak to my GP or oncologist as I know what the answer will be. There is nothing at all I can do about it. I am not 100% sure it is the lymph nodes but am aware of the slight ache today.
I am going to do my mistletoe and go to bed. Hopefully, tomorrow I won't feel tired. I am off for 3 days and have an extra day off as I am going away with friends.

not a good night

I woke up last night with heart burn which was very uncomfortable. I took my inhaler to ease off the breathlessness and tried to get back to sleep. It took a while and soon I was aching and shaking. I am hoping that is the Mistletoe kicking in and not another chest infection. I will see how I go today and will see the Dr tomorrow if it continues.
I have to do my Mistletoe jab tonight and hope that doesn't affect me as I do want to go to work, I have had a lot of time off and my manager is very good and seems to understand as I know he would let me go home if I felt too ill. I only have tomorrow and then 4 days off as I am going to St Ives with friends for the weekend.
The plastering in the living room is done (hooray!!!!) and next week I will start on the painting (boo!!!!)
I have friends who will be more than happy to help me. They are wonderful people.

Monday, 12 May 2008

back to work

I went back to work this afternoon and I must admit, I feel absolutly shattered.

I had a fun time in Dingles store with Michelle and another lady with Alopecia called Stacey. we revealed our baldness in front of the camera and tried on a different wig. The programme is a profile of Michelle and the good work she does for Alopecia and how inspirational she is to others. The peice we filmed will be a blink and you miss it job and hopefully, the whole programme will give Michelle the pat on the back she deserves.

I have been a little concerned lately as I am sure the lymph nodes in ky groin area are swollen. I am not sure if it is the cancer or not and don't want to ask my oncologist as I don't want the negativity and there is nothing that can be done anyway. What is the point of saying anything when there is no solution. It isn't painful, just stressing.

ITV filming for Alopecia

I am going into town this morning and meeting my friend Michelle who has Alopecia (she has had it since she was very young) and has been a great support to me with my alopecia for 4 years now, She is working on a programme for ITV called "the great British body" with Trinny and Suzanna and She asked if I would try on wigs for the feature and I agreed. I will add more when I know more.

I am out for breakfast this morning and back to work this afternoon.
I haven't heard from Prof Vogl since last week. I hope he is in touch soon.

I watched BBC news this morning and saw a wonderful lady on there called Kate Spall who fights for cancer patients to have treatments they need.

http://news.bbc.co.uk/1/hi/wales/north_east/6945602.stm

There is a little more info in the link above.

Saturday, 10 May 2008

Cancer Vaccines

This is an interesting site. I was looking for information on Dendritic cell vaccines and came across this one which explains how it works.
The vaccine is offered in Germany and I will be asking Dr Vogl about it and if I can recieve it.

http://health.howstuffworks.com/cancer-vaccine2.htm

I have had a busy day today. I ran the 100 metres hurdles but didn't quite make the jumps. I swam with Kieran and failed again, the shot put was even worse, I threw it at the fence. No I haven't been trying out for a decatholon, I have been playing Wii sports with my son, and he easily beat me!

Picture that makes me smile

I was looking through my pictures on my laptop and came across a lovely one.
This is my little boy, Kieran, having a haircut a couple of years ago.
It is such a lovely fun picture and I wanted to include it on the blog as it made me smile.

Getting Plastered !!!

The plasterers will be in today to do the walls in the living room.
My little house is a mess, we can't get in the kitchen and the bedroos as we have stored everything from the room. The only thing left in there is the TV as there is no where to put it.
Once this room is done we can then move onto the the bedrooms.
It looks a lovely day outside with the sum streaming into the empty room.
Tomorrow we can have a free day and won't have anyone comng in. Maybe we will go out somewhere and have some time together rather than look at bare walls.
There is so much work to do but I am lucky that the guy who is decorating my home is wonderful. I feel like I am being looked after as he has taken charge of everything. He has his team working in the house and has already made a great job of the garden.

Friday, 9 May 2008

Chris saves the day

I went out with 2 friends from work today, Chris and Becks. Unfortunatley Jeannette,My other team mate, couldn't make it as she had a migraine.
We went out to a little place called "the old police station" which is a caf'e in Princeton on Dartmoor and came across a little horse stuck in a stream. We stopped the car and got out to see if we could help.

My friend, Chris was the hero of the day and lifted the little horse out of the stream.
Horse and mother trotted off into the woodland unaware of the trouble they could have been in if Chris hadn't helped.

We had a lovely lunch in the Skylark which is a pub on the moors. It is such a lovely place, so beautiful, and like most people, I don't appreciate fully the beauty of the city I live in.
I got home in time to meet Kieran as he had been away for 4 days. He had a wonderful time.
The house is a complete mess as the decorators are in.
I went out and left them to it.
I think I had a better day than they did!

I will be having my mistletoe jab this evening. The itchy site and sickness seem to have disappeared and I hope it stays like that. I feel very well in myself and the German treatment has given me so much hope which has added to the way I feel. Ihaven't felt so confident and happy for a long time. The next Mistletoe jab is on Tuesday.

Thursday, 8 May 2008

Busy day


My daughter, Siobhan, her boyfriend and I have been busy today. We have cleared the living room as the walls will be prepped for plastering tomorrow and we had a little help from Shadow.

He was so sweet, he came in and layed down on the box we were moving. He is such an attention seeker. We went out for lunch afterwards and then took a walk around some charity shops in the area and picked up a few bargains.

We have a little more to do tonight like removing nails and pictures hooks from the walls and that will be it. The Kitchen is full of the things from the living room but it will hopefully be worth it in the end.

Lunch yesterday

I had a lovely lunch yesterday with my friends. We went to a little pub in Plympton and sat outside in the sunshine. It was such a beautiful day and it was so chilling. My cousin, Gina, came along as well and it turns out she didn't live far from my friend, Helen, when she lived in London!
It is a small world. Julie and Tina also came along and we had a brilliant afternoon.

Today My daughter, Siobhan, her boyfriend and myself will be clearing the living room out ready for the decorators to come in.

We will hopefully be having some time out this afternoon, not sure what we are doing yet. It is such a lovely day that it would be a shame to waste it staying indoors.

I had a call from Kieran last night and he is thoroughly enjoying himself. He has been rock climbing and abseiling which I am so pleased about as he isn't a child who would try anything unknown. Today he is going mountain biking. He will be back tomorrow with all his stories I am sure.

Wednesday, 7 May 2008

Call from Germany

I have just recieved a call from Professor Vogl in Germany and he has said yes to the Chemo embolization treatment.
There will be 3 treatments at monthly intervals, I am so pleased, I feel I have some hope at last.

Tuesday, 6 May 2008

Mistletoe jab

I have just had my Mistletoe jab and the next one is on Friday.
I am so hoping that even the smallest result will make me feel positive at my next oncology appointment in July.
I want to see my oncologist and be sure that he knows I am not giving up and I don't want him to give up on me either.
It must be difficult for him as he sees the disease and not always the person. He has been very supportive towards all my ramblings about alternative therapy and I hope he supports my wish to try Germany.
I still don't know how much it will be and hpe that it will come into my budget as most of the monies I had from the MoD went into paying off debts and buying my ex out of the house.
There is a little left but I do want to get a new house for the family, I don't want to have any battles with what to do.
I am lucky that I have my health insurance with my company and will find out if they wll fund any of the German treatment.

Busy day today

My little boy, Kieran was all packed and ready to go off on his trip with his school.
He hasn't been phased at all by leaving us behind, which is good.

He was excited about going , his dad came in to see him before he went to school to wish him well and to help me with some of the packing up I will be doing today.


My sister Wendy, my friends Julie and Tina also came over to help out and they were brilliant.


We have cleared all the stuff I want to keep but don't need at the moment and have sorted out what needs throwing and what is for charity.


It has been a lovely day and we have all worked hard. I made us all lunch and then we all went our seperate ways.


I will miss Kieran tonight but he took a £1 as he is allowed one phone call....it is like prison : )


He will ring up on Wednesday or Thursday to let me know how he is. I am sure he will be fine.

Monday, 5 May 2008

Mandy Kaminskas


It is with great saddness I have to add that Mandy Kaminskas has passed away.

Her husband, Ray, called to say she had passed away and it was very kind of him to make the time to do that as he has so much to cope with at the moment.


My thoughts are with Ray, the children and their family at this difficult time, it is a terrible waste.












Good morning

Kieran is getting ready to go away with school tomorrow. He will be away until Friday and I am sure he will have a good time. He isn't too keen on the mountain biking but I am sure he will gie it his best shot.
I am still trying to get the house sorted out and will have a few willin g victims tomorrow who have offered to help.
I need to get the house up for sale and move on as soon as possible. We all need to have our own space and at the moment, the house is too small for us. It is only a little 2 bedroom house which isn't big enough for 4 of us.
I will miss this house as I have lived here since 1984 and so much has happened. 2 marraiges, 3 children and 5 cats, 6 with Shadow who will also find it hard to move.
I didn't intend to get a cat until we moved but he moved in with us and decided this was his new home. He is lovely to have around.
Theo has been very quiet lately and is hopefully contemplating his appraisal in July. He hasn't caused me much trouble as the problems I have had are nothing to do with him (my tumour)
I have had a chest infection and asthma which both seemed to have calmed down now and I feel good in myself which helps with dealing with this.

Sunday, 4 May 2008

300th post!!

Well.....300 posts, that is amazing, I can't beleive I have written 300 of these since October 2006.
Also in the message board, it is showing that up until now (17.57pm) 113 people have logged onto the site in the past 24 hours. Not sure if it is a mistake or if that has actually happened but if it is genuine then....WOW!!!
It is so good to put something more positive towards having this cancer. My daughter, Siobhan, has done a fantastic job with this website, she does the hard stuff while I write my diary.
Thanks to every one who has logged on in the past 24 hours, I still can't beleive it as the most in one day was 37.
I have been busy today as my brother-in-law isn't well, he is in hospital and I have taken my sister up to visit him as she does not drive. I am still trying to sort out the house....who's idea was it to move!!!
I am also getting Kieran's bag packed as he will be away with school on Tuesday until Friday and he seems to be looking forward to it. I am going to chase up Dr Callebout again and also Germany and find out just how much the treatment will cost.
With Kieran being away I am hoping to get a lot of the decorating done.

I did my mistletoe injection last night and feel a little tired today but nothing major. Next jab is on Tuesday

Saturday, 3 May 2008

Me and my Shadow

Shadow my new cat has decided where he is sitting while I update my website. He has parked himself in such a way that he will get all the attention.

He lost his collar today and I bought him a new one as he does wander off at times. He has got so friendly lately and seems to have settled in really well, as you can see from the picture.

I had just come back from pizza hut with Kieran and Siobhan and decided to add an entry about that when he made his move.

He is such a great friend to have around, I am so glad he chose us.

Mesothelioma UK patient and carer day

Mesothelioma UK have organised the 3rd Meso patient and carer day on October 4th in the Queens Hotel, leeds. Last years event was wonderful and informative. It was so positive and I came away feeling that I had some hope.
If you are thinking of going, book it early as last year people were turned away.
For a review of last years event, look in October 2007 diary link.

I made a weekend of it and booked the London eye with my friend Jeanette.
We had a great time as we stayed in the same hotel and had some chilling time aswell.
I am off for 3 days now and have taken another 3 days off to sort out the house. I have a couple of friends coming in to help me which should be fun (Don't know how much work we will get done though!!)
The front and back gardens are looking good and I am getting the inside sorted, I need plastering done and then painting. Once it is all done, I can put the house up for sale and think about moving to a new house.

Friday, 2 May 2008

Can't sleep

It is 2:20am and I am having another restless night, I was feeling a bit tight and came down to take a dose of my inhaler which seems to have cleared it.
Everytime I have any tightness in the chest I automatically think the worst and on 2 occassions now I have been wrong.
I hope I am wrong every time as it is so wearing on the mind when an issue with any illness that restricts the breathing arises.
I was met by Shadow, our cat who happily chomped on his food while I made a hot drink and then settled beside me while I wrote this blog. He is such a comfort to have around.
I am glad the night sweats seem to have gone as they were so uncomfortable and the sckness I have had for the last few days seems to have gone aswell.

I have got a lot on my mind, the biggest thing is sorting out the house to get some plastering work done inside. I have got a few friends coming in next week to help me sort out the yes's and no's of my junk. I know they wil be more brutal thatn I ever can be as I get very sentimental over the daftest thing. I have my Metropolis pictures and memorabilia which I love. Metropolis was a film from 1926 -1927 which is said to be the first science fiction film ever made.
It is an amazing silent film and has had many fil scores done to run along side of it, my favourite is Georgio Moroda's version from the 1980's. I have a massive poster and a lamp that I intend to display in my new house. I am in love with the robot in the film.

I also have a lot of Cure memorabilia, books, videos, DVDs and CDs which I love so I will have to fight to keep them. I hope my friends understand that I am having a love affair with Robert Smith!!

Well, I am going to make my drink and go back to bed as I have to be up in the morning to put Kieran on his school bus and to get ready for work.

This has been one of the more pleasant wake up mornings as I don't feel upset or miserable, just unable to sleep.

Thursday, 1 May 2008

Back to work

I returned to work today after getting over the chest infection I had. I have got through the day very well and didn't feel nauseous at all.
I didn't take my last 2 antibiotic tablets yesterday as I think that is what is making me feel ill.
I went into work and was met by a new friend, Colin the Camel!!!
The call queue I am on has launched a new animal package and to promote this, I was given some goodies, sweets, puzzle book, badges, balloons and of course, Colin.
He has been very well behaved and maybe I will think about keeping him employed at my computer.
I enjoyed today at work as I have missed my friends.
I will be back in tomorrow and then off for 3 days, nice short rota this week!