A Postcard from Theo

About this blog

2011-01-07T04:24:00.000-08:00

I have created this blog to give a little more insight about the treatment I have had. This is from my point of view and does not emulate anything a medical professional may advise.

This journal details my Mesothelioma journey from May 2008 until the present.

Contact information for Professor Vogl who is performing my chemoembolization procedure is

PROFESSOR THOMAS VOGL

Johann Wolfgang Goethe

University Clinic (23c)

Theodor Stern Kai 7

760590

Frankfurt am Main

Tel : 00496963017277

Email :

T.Vogl@em.uni-frankfurt.de

7th treatment.

2011-01-06T01:13:00.000-08:00

I have had my 7th chemoembolisation treatment done, Considering that the last treatment I had was Decmeber 2008, I think that is good going. I have had a small progression in the left lung, could be due to the lymph node enlarging in 2009. I had radio therpay on that but it may have caused the growth.

I arrived in Frankfurt on 3rd January 2011 to see the Prof. This time I was accompanied by Rita, a great friend who lost her husband, Peter to mesothelioma. She has been wonderful. Going into the theatre was like coming home, so many familiar faces and all very excited about how the treatment has helped so many people. I wish it could help everyone, such a shame that some don't make it. The Prof sees late stage patients which is a dilemma in itself as he is their last hope. Profs team knew all about our facebook group, the warriors and all the work we have been doing to bring mesothelioma to the forefront. It made me feel so proud to be part of it.

The treatment went well and I returned home on 5th January.

I will be having a CT scan in the next couple of weeks and am hoping the treatment has impacted on the growth.

Theo, if your listening, it was lovely to spend Christmas with you, but now you have to go back to your pad in Frankfurt. Please take some more of your belongings, I hope to find more space when I have the CT scan.

....a lot more good news...I hope it never stops!!

2009-06-10T10:50:00.000-07:00

I went to Frankfurt on 8th June 2009 for another check up and had another pleasant surprise.

After having the CT and MRI scan done I went to see Prof Vogl.

Jeanette video'd the session for local BBC news.

Professor Vogl talked in German into his dictaphone. He asked me if I had had any treatment since he last saw me and I said I hadn't.

He seemed to be suprised. I asked him if he could put the scans from May 2008 on the screen beside the June 2009 scan. Wow...... it was remarkable!!

I was shocked at just how bad things were back then. No Wonder he was surprised... Another 10% of the tumour had gone. Theo had taken his designer shoes and now has a small amount of his personal belongings left. Maybe he will take it in the next few months. I have to make an appointment with my own oncologist in Derriford Hospital in September and the scans to be sent to Prof Vogl. This will be easier than travelling as it was difficult this time. Jeanette and I had to leave from Birmingham

......... and even more good news from Germany!

2009-03-09T04:29:00.000-07:00

I have had another 20% reduction in the tumour...Woo Hoo... Professor Vogl in very impressed with the way my Meso has responded. He wants to study me to find out why it has responded so well to this treatment when it has so little that makes any impact on it.

He also told me that I have a narrow Oesophagus which I am going to speak to my GP about. I have always had issues with drinks as I find I splutter a little when I have some and other times I am fine.

Jeanette and I have had an amazing Journey, She has been a truly wonderful friend and will continue to support me in Germany.

I have a new man in my life, Mr S, who has been lovely. I knew him over 25 years ago and we both feel so happy about meeting up again.

My life has turned a corner and become a joy, I would love to wave a magic wand and give some of this to other people who are going through their tough times at the moment. Jade Goody is one who springs to mind and I can't help wondering if this treatment would help her. I find it impossible to get any word to her, I can only hope that she can find something to give her back her future, It is a terrible time to go through.

More Good results from Germany ............

2008-12-10T02:47:00.000-08:00

It has been an amazing few months. I returned from Germany on 14th December and have been given the best Christmas gift I could ever wish for.

I had my last procedure done on 12th December and Professor Vogl told me it had shrunk again....another 10%! That is 53% gone now....and it didn't stop there!!
When Jeanette and I went to see him for the consultation later that day, he said that the tumour was dead....sorry Theo....that's a bit harsh.... I must admit I had a twang of sadness when the Prof said Dead as I want to feel the Theo has moved to Germany and he is not hurt as we have had a good relationship. He was kind to me for a whole year. I asked him if Theo would come back and he said he may not. I was overjoyed and am still elated by the news. I cannot take it in at the moment.
I said I wanted to get the procedure over to the UK and he said I would have a better chance of getting a rocket on the moon.....I love a challenge...so I am looking for my rocket.
I cannot believe that Jeanette and I have finished our adventure ad we have got such a wonderful result.
Jeanette has been a great support to me. She has done so much, leaving her family to support me. I hope she knows that I appreciate what she has done for me. My next appointment will be in March for a scan. I will travel to Germany and see Professor Vogl who is following up on the progress. By then the tumour should be virtually gone....yay!

Another good result

2008-11-06T14:25:00.000-08:00

Wow....another 10% gone!!

43% now.....

Professor Vogl asked who the patient was when he came into the operating theatre and I told him Jeanette was : )
He then said that we had another significant change.....10%!
He told me to keep doing whatever I am doing as it was working. He seemed very suprised to see more of the tumour had gone.
Sorry about the terrible picture but it did emulate what we were feeling when we found out about the 10% decrease and the excitement that we could show 5 hours later. Talking of pictures, the one of Jeanette (below) is lovely. We stepped off the plane and into Christmas!
The decorations were beautiful, as you can see!
Jeanette and I are such children.....we gasped with excitment when we saw them. The Germans must think we have lost it!

2008-09-27T09:37:00.000-07:00

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/

2008-09-26T12:32:00.000-07:00

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.

Another good result

2008-09-25T19:52:00.000-07:00

Theo is doing well and loving it here.
He has now removed another 15% of his belongings.
That means there is a 33% difference now in the size of the tumor.

I am having another procedure in November and one in December, and that should be it.
Professor Vogl's team told me that they would like to set up a mobile treament centre in the UK for mesothelioma.
This would be wonderful if it happens as there has been a big improvement in the tumour shrinking and my well being.
My worries have melted away and I am a very happy soul at the moment.Well done Theo!!

We have arrived!!

2008-09-24T21:14:00.000-07:00

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 for Bristol airport.

We had a very safe journey to Frankfurt and are staying in the Radisson in Frankfurt.

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 the city.

We are going to have something to eat and are going to enjoy the wonderful German hospitality.

We have to be up early tomorrow as my appointment with Professor Vogl is at 8:00am.

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.

Frankfurt again

2008-09-23T08:52:00.000-07:00

Jeanette and I 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.

Remembering my dad.

2008-08-26T09:35:00.000-07:00

My dad was a great Jim Reeves fan. When my sisters and I were younger, that was all we heard.
There is a radio in the bedroom at the cottage and it is has an alarm on it.
I heard it on and went in the bedroom to switch it off. I stopped and sat on the bed and listened as tears rolled down my face. I heard Jim Reeves singing "I love you because" and felt like my dad was in the room with me.
I am a very big sceptic and don't believe in anything unless I have proof.
This was so weird but it felt like it was a message. This all happened just after I had written my blog.
If it was you dad, thanks, it was just what I needed and I love you so much too..

Remembering my father

Philip Northmore
1937 - 2006

My father died 2 years ago today and it feels like I am reliving that day again. The pain hasn't gone away. I still miss him so much.
To this day I have always thought that chemotherapy took him from us. It destroyed every cell in his body, good or bad, and brought this wonderful man to his knees. It turned a very young 68 year old into something he never was, a frail old man.

I will light a candle to his memory today and when I get back home, I will visit the cemetery and lay some flowers for him.

Dad, If your listening, I love and I know you are around, I can feel you. I know you are supporting me through this time in my life and you give me the strength to fight back and help others in my situation. Together we will make a difference.
Thinking of you always and never forgetting you

Debbie x x

Remembering Erna

2008-08-22T07:59:00.000-07:00

I had an email today from a friend of a lady I met in Germany, Erna.
I met Erna in May when I went for my first Chemoemolization treatment in Germany.
We both waited in the ward for the nurse to tell us we could leave the hospital and imagined our water being a cocktail.
There was a picture of the human body on the cup the water was in. It was very detailed with intestines and organs clearly marked out as it was promoting the CT agent used to illuminate the orans for a scan..

We had to change that and decided that we weren't in a hospital in Germany, we were lying on the hot sand in the Caribbean drinking "sex on the beach".

We were both in hospital with very serious illnesses but managed to rise above it.

She had a great sense of humour and we hit it off right away.
We had a giggle and it was good to find someone on my wave length.

Unfortunately, Erna passed away on 1st August as she was very ill with Liver cancer.
Her friend emailed me to tell me.

This has been heartbreaking as we had become good friends through email and I will miss her.
Todays blogs are dedicated to Erna.
She was and always will be a truely wonderful lady.
Condolences and special thoughts are sent to her family and friends.

Here's to you Erna, a sex on the beach cocktail which I raise to you. I will never forget you and your wonderful spirit.

BBC local news

2008-08-07T17:35:00.000-07:00

I was looking through the internet and found the BBC local broadcast of my interview.

http://news.bbc.co.uk/1/hi/england/7521723.stm

I have had so many people contact me since this broadcast asking about the treatment. I am so pleased to be able to give something to sufferers of Mesothelioma and, hopefully, it will work for them as well.I also found the Christmas tree one, I am adding it below.

http://news.bbc.co.uk/player/nol/newsid_7090000/newsid_7093000/7093019.stm?bw=bb&mp=wm&news=1&nol_storyid=7093019&bbcws=1

While looking for these I found a really good interview with an insurer. The report is about Des Murphy, another innocent person doing a days work and happens to have asbestos he is working with. He contracted Mesothelioma and has died since. The reporter for BBC north west is relentless with her questions. I thought it would be good to add it and watch as the insurer squirms at the questions being fired at him.

http://news.bbc.co.uk/player/nol/newsid_7250000/newsid_7255800/7255836.stm?bw=bb&mp=wm&news=1&nol_storyid=7255836&bbcws=1

2008-07-22T13:20:00.000-07:00

Jeanette and I had a good trip on the plane back to Bristol. I still have my pressure pad on as the vein Professor Vogl goes into needs constant pressure on it for 24 hours.Jeanette drove back to Plymouth in her car while I relaxed to the sounds of David Essex.

I have had a call from the BBC who I have kept in touch with and they want to do a piece to camera about the results from the chemo embolization.

This is good news as I was going to ask them about doing it. I am shatterd but will be doing the filming today. I am picking Kieran up from school, it will be good to see him.

Jeanette and I met Dawn and her friend, Sarah at her hotel last night which was an extra bonus but has made us very tired today. We could have chatted all night. We left Dawn and Sarah at around 1:ooam and got up this morning at 5:30....ouch!!!

It was good to meet such an inspirational lady who has a lot more going on than I do.

Meeting Dawn

2008-07-22T06:15:00.000-07:00

I met Dawn Hughes last night. Dawn has been a great support to me and has inspired me to come to Germany for this treatment. She has been so helpful even though she has had her own cancer issues to deal with.

It was so good to meet her, we could have talked all night but she has her procedure in the morning and I wish her all the luck with it, she deserves it.

Thanks Dawn, you have been amazing!

Good Morning

2008-07-21T20:55:00.000-07:00

It is a beautiful morning in Frankfurt, the sun is streaming through the window. I am looking forward to seeing Professor Vogl and finding out if there are any more improvements with the Chemoembolization.
Jeanette and I will be leaving the hotel at 9:00am for the appointment at 10:00am. Theo seems to love it here. He has settled in very well and hopefully he has packed more of his belongings for a longer stay.
Good luck to Jill in Texas who is having an operation today.
She has Mesothelioma and it is very advanced. She is a fantastic lady who has been through a lot.
Her tumor is Mr Meso and she is waiting for him to move on.

Mr Meso, start talking to Theo, he will tell you how good it is outside and how to cope on your own with out Jill.
Maybe you could visit him in Germany, make it a long trip!!!

Jeannette and I went into Frankfurt last night and ended up in the middle of what looked like a gay pride rally. There was a comedian on stage who, from the audiences reaction, was funny. We couldn't understand a thing. We recognized the Abba song though!
We walked around Frankfurt town centre and found the biggest bird bath ever!
I think the pigeon was very proud of himself.Well I have to go and get showered.
I am going to meet Dawn tonight if I feel up to it.
She is coming in for her treatment and we have been in touch on email for a while. Dawn has her own website.

http://www.wigstowishes.org.uk/

And the good news from Germany is .......

Theo has taken another 5-8% of his belongings and left. I `am so pleased. Jeanette was more excited than me and ran screaming, very discreetly, through the corridors of the university clinic. Professor Vogl saw us on the ward around 8:30pm German time and told us the good news. I have been told there is another treatment in August. I thought there were only 3 but now there are 4. We will be meeting Dawn soon and will catch up with her about what has been happening.

All packed and ready to go

2008-07-20T06:42:00.000-07:00

I am all packed and ready to go.Jeanette and I will be off to Germany for my last treatment with Professor Vogl.

I really hope that I get a good result like the last one.

If not, I am happy with the amazing result already. I am not going to be angry if there is no more shrinkage.

I have gained so much from this and hope to put it out in the public domain when I come back. Auf wedersein!

Back to work

2008-07-07T20:35:00.000-07:00

I have finished my rotation in work. I had an hour offline so left at 7:00pm instead of 8:00pm.
My manager organises an offline lottery and once a week someone wins it and I did this week.....woo hoo!!
I have worn my tiara all day as I want to feel as good outside as I do inside and anything I gain in work like stats or offline lottery, I will wear it.

Don't know how long it Will last and people may get fed up with my happiness but I am not bothered by that at all.
Kieran is off to his senior school tomorrow for the day. He says he is looking forward to it which is good.
I am so pleased to be able to be here for this because it was all so different 18months ago.
He is also off to Disney land Paris next week with his dad and I will really miss him.

Celebrating the news

2008-07-04T20:45:00.000-07:00

I went out this evening with Siobhan, Kieran and Siobhan's boyfriend, Seddon, to celebrate my good news. I haven't felt this happy for a long time.
This is such a good feeling and I want it to go on for a long time.
It was good to toast the next few years as I can see my future on the horizon and it looks good.
I am so grateful to Professor Vogl for helping me as I feel like I have found a little miracle.
Everyone with Mesothelioma should get this treatment and hopefully now it will be possible.

More good news

2008-07-04T17:22:00.000-07:00

My oncologist was brilliant this morning.
I was with my friend, Jeanette and my daughter, Siobhan.
We arrived there at 9:15am, we were called in early and my friend, Wendy, was late, not her fault as the appointment was for 9:30am and I think my Dr was so excited, he called us in at 9:15am!.
At first my oncologist was bubbling about the lymph node shrinking.....yay!!!........ and then went on to say that he couldn't predict what mesothelioma will do and that the disease was now very stable.
All good I thought and then I handed him the information from Germany and his face dropped. He was rather shocked to see the paper work for the 2 embolizations I have had and I was surprised as he had sent all the information to Germany, well....his secretary had.
He was very pessimistic about the procedures until Jeanette told him that 2 different veins were used and that she had watched the whole procedure on the screen in the theatre.
He then realised that Professor Vogl was very reputable. He asked for some more information about the procedures as he wants to know more about the area where the embolization is administered.
He then said that Chemoembolization is performed in Derriford Hospital, Plymouth, but not for Mesothelioma.
He said he was going to discuss this with the radiologist and I asked him if it could be done for Mesothelioma in Plymouth as it is shown to work.
He was very positive about it and said he wanted to show the info to others involved with Chemoembolization in Plymouth.
I also asked about Dendretic cell vaccine and he is going to look into that and let me know if he can find some one in the UK who can do it. He has also commented again about my weight loss and has prescribed fish and chips 3 times a week!
He is now monitoring my weight so I really do need to start putting it back on again even though I feel better for reaching my BMI.
All in all it has been a very good morning. If I can persuade Plymouth's hospital to take on this procedure then hopefully it can be done all over the country.
My friend, Julie looked after Kieran for me as he was off school again.
I went out to pick up Kieran who had been watching......guess what.........yes......TRAINS......... as Julie can see them from her kitchen window.
He was in his element. We then went into town and I treated myself to a nintendo DS and a game .... SPACE INVADERS for the DS!!!
Julie gave me a bottle of champagne to celebrate this good news.

CT scan today

2008-06-30T17:38:00.000-07:00

Kieran was sick again last night so that is another 48 hours off school.
I am sure I am coming down with it as well as I wasn't all that good yesterday and am feeling yukky today.
I am back to work tomorrow.
I went for my CT scan and got through it very well. I am absolutely brimming with confidence and happiness at the moment and I don't want it spoilt.
I will be seeing my oncologist on 4th July.
I hope he is positive, I need him to be. I am under no illusions with what is happening to me but I need to keep my head clear.

2008-06-23T12:35:00.000-07:00

I am adding some pictures that Jeanette took of the Germany trip.

Her memory card woudn't work on my laptop so she sent them insteadThis is me after getting stuck in the toilet and waiting for my procedure to be done.

As you can see the fashion in Theatre has not changed,the shoes are great aren't they!!

And here is the main man, The man who has given me so much hope, Professor Vogl. He is so wonderful and very down to earth.
This picture was taken after he had told Jeanette and I about the 10% change in the tumour.
He was getting ready to jet off to Los Angeles for a meeting and a well earned break I hope.
I will be off work for a week and then back to work on 1st July.

I will then be off to Germany 20th July and will have the third procedure on 21st July and back home on 22nd.
It will be wonderful to have another reduction but if it is still 10% I am happy with that.
Later on I went out with Siobhan and her boyfriend. It has been a wonderful day, If anyone is listening.....I want a lot more of these please!

Back home

2008-06-22T16:20:00.000-07:00

Jeanette and I got up at 5:30am and were shattered.
We both felt it was too early but knew we had to get up.
We got packed and left the room and went down for a taxi.
I realised on the way that I had left my coat in the room. I rang the hotel to let them know and to ask them to keep it for when we return.
Everything went really well with the journey and we got to Bristol at around 11:45am (10:45am UK time)
When I got home, Siobhan was there, Richard came home about an hour later.
I went out to see Kieran as I had missed him too, he is staying with his dad until Wednesday.
It was good to be home.
I will make an appointment with my GP tomorrow to get a sick note as I will need one for work.
I can feel the sickness and am feeling very tired but, appart from that,
I feel good.I keep looking at the CD Professor Vogl gave me as I can't quite believe that 10% has gone, It is like a dream come true.
I really hope more has gone next month.
My next expedition ios to Derriford hospital on 30th June for another CT scan for my oncologist. I think he will be suprised when he sees the results!

Good news from Germany!

2008-06-20T19:45:00.000-07:00

Well....it has happened....It's official, Theo Loves Germany!!!
I went to see Professor Vogl this morning and first of all, decided to go to the toilet as I was feeling very nervous, and then it happened.....I got stuck in the loo!!!
I was banging on the door and shouting for Jeanette and thought "oh no....will anyone miss me" , Jeanette came to the rescue and got a nurse/doctor.
I eventually managed to unlock the door, the lock had got stuck....phew!!!!I then went into the theatre and Professor Vogl asked me how I was feeling and I told him I was feeling very well.
I also told him that I felt my breathing was much better and was not sure if it was the tumour shrinking or if it was psychological thinking.
He said there had been, in his words, "a significant change" and my breathing getting better was what he had seen.
We were very excited and after around 6-7 hours, we went to see him.
He told us it had shrunk 10%!!!!
we were exstatic, he was so wonderful and even let Jeanette take a picture of him!
The second treatment went very well. This is the best day I have had for a long time, it is up there beside having my 3 beautiful babies.

Thank you Professor Vogl, your brilliant!

Professor Vogl has told me that there are Drs in the UK who will do the dendritic cells vaccine and to ask Dr Callebout for some names. I will do that when I get back. I am glad really as it will be more expensive with flights and hotels included in every treatment.

We have arrived.

2008-06-19T06:13:00.000-07:00

Jeanette and I arrived in Germany at 2:30pm uk time.
It is quite warm hear. I bought a newspaper before I went on the plane as the headline was about the new immune therapy that has been sucessful in America.
A man, who isn't name, has been clear of Melanoma for 2 years after having his cells cloned in a laboratory and returned to his immune system.
Sounds a lot like Dendritic cell vaccine to me or very similar.The uk is so behind in these treaments and it is so expensive for anyone wanting to try it as for most of us cancer sufferers, there is nothing else left.More about the story is in the link below.

http://news.bbc.co.uk/1/hi/health/7460743.stm

Back to Germany

2008-06-18T06:10:00.000-07:00

I am off to Germany tomorrow for the second chemoembolization treatment, I am not going to expect any change but if there is any shrinkage, it will be a bonus. I feel very well in myself and am hoping that the reatent has had some affect on he tumour.
I had a restless night last night and am sure it is all tied into the stress of the illness.
I will be travelling to Bristol with my friend, Jeanette, and will add the blogs again as it happens.
The biggest issue with all of this is the money as it is all so expensive. I wish that something was available in the UK for this treatment.

Back to work

2008-05-30T20:45:00.000-07:00

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.

All going well

2008-05-27T05:52:00.000-07:00

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. I do think the mistletoe helps a lot with the symptoms as I think I would feel much worse without it. Still can't get my head around stabbing myself though !

Not well today

2008-05-26T05:50:00.000-07:00

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 (Kieran) 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 sent but 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.

If the CT scan next month shows a change it will be wonderful, the smallest change in the size will be worth all the sickness but I can't afford to lose any more weight as my oncologist will not like it.

Home from work

2008-05-25T05:47:00.000-07:00

I went to work this morning but ended up coming home after I felt lightheaded and nauseaus.
I have a very understanding boss 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, our cat has gone mssing and has not returned home, I think we may have lost him which is 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.

Back home

2008-05-23T11:55:00.000-07:00

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.

Sleepy time

2008-05-22T05:42:00.000-07:00

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

2008-05-22T05:39:00.000-07:00

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 German 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 tourniquet and relaxed a little before trying to get back to sleep.
Not sure if it was the tourniquet or me that made me feel restless. I will try and sleep, hopefully removing it would have worked.

Been and done it!

2008-05-21T06:34:00.000-07:00

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 banking 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 put 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 minutes. 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. She was aqbsolutely lovely and we jokes about our water being a cocktail, se on the beach!

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.

Meeting Professor Vogl

2008-05-20T06:11:00.000-07:00

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 claustrophobic 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 wasn't a cure but 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!!

We have landed!

2008-05-19T09:45:00.000-07:00

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.

Nerves kicking in.

2008-05-18T05:22:00.000-07:00

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 requirement 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.

http://www.globaltravelchoices.co.uk/

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 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.

Professor Vogl

2008-05-14T05:15:00.000-07:00

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. I have 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. Jeanette, my friend from work, will be travelling with me. It is a lot for Siobhan t cope with and I will be going into this completely blind.
I have had a lot of great support in work and 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.

A call from Germany

2008-05-07T05:10:00.000-07:00

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. From what he says, he will perform the procedure next week!
That is moving fast and give me a little more hope. My oncologist has sent all the paper work over to Professor Vogl and he now has a idea of the stage I am at.

Good Morning

2008-04-27T08:40:00.000-07:00

I am feeling much better this morning, the pain in my shoulder is going and the breathlessness has not as bad as it was.I was so frightened that I was on the downard path and am not ready to leave my children and life behind.
I am still feeling a little tired but will try and rest as much as possible before Wednesday as I am due back to work.
I am meeting some friends this morning and having lunch with my daughter, Siobhan so it should be a nice easy day.
I am going to call the hospital again about sending my records over to Germany. The next Mistletoe jab is due tomorrow and I will see what Dr Maria thinks about what has happened in the last week.
I really hope the Mistletoe has helped to kick the chest infection into shape as apart from being tired, I feel so well in myself

A Message to Theo

2008-04-27T05:05:00.000-07:00

Come on Theo.......what has happened to us? I thought we were pals!!I will be taking you on a trip to Germany soon if you don't stop bothering me....your choice boy!

Not good news

2008-04-26T05:01:00.000-07:00

I went to the out of hours Dr's surgery this morning and explained to the Dr about the pain and tightness I was experiencing.
She listened in and told me that it was not the Asthma as there was no wheeze and it was probably the tumour that had grown.
I feel so let down as I was hoping the Mistletoe would just keep it contained and it wouldn't grow for a while. It seem that Theo is determined to take over and our deal is off.
I am going to contact my oncologist on Monday and get him to send the last report of my illness to Dr Vogl in Germany asap.
I have not heard from Dr Callebout and I must admit, I did think I would hear from him by now as it is important to get things started.
I am very worried now as I do not want to die, This illness is such a cruel, unfair one.
No hope, no cure, no future.
Why has the UK not caught up with Europe and give hope for people with this awful cancer?
I am so angry and am not prepared to take it lyng down because if I do, I may not get back up again.

Can't Sleep

2008-04-26T03:05:00.000-07:00

It is 3.00am in the morning(feel like I am going to burst into song.... : ) and I have just taken some more pain killers as the pain in my shoulder is quite bad.
It reminds me of the pains I had when I first started the symptoms back in 1994.
I think my Asthma has kicked in and at the advice and fear of my great friend, Julie, I will not be going to work but I will be making an appointment at the emergency surgery this morning.

I am hoping they don't say that I have to go into hospital as I don't want to do that. If I can get rid of this pain in my shoulder, it will be easier to live with. I am also going to contact my McMillan nurse next week and see if there is any support I can have with sorting out the house and the family as I am sure I am doing too much.
Dr Callebout would be tearing his hair out if he could see me now. He thinks I should be relaxing and leaving any stressful activities to someone else, he told me to delegate....who to?

I like going to work and don't like taking time off.
Sometimes I will have to but the only reason I am doing it is because of the pain and the breathlessness.
The inhalers are not touching the asthma so I may need some steroids to kick it into touch.
Poor Theo (my tumour) has been getting the grief for it and I don't think it is him who is playing up!
It feels like the pain killers are starting to work as I am feeling tired and the pain has diminished to what it was. Yesterday morning I took them and scared myself by dropping off to sleep and letting out a huge snore! I looked around but there was no one else to blame as I was on my own!!
Well....I am off to sleep now and will add more tomorrow

Not feeling well

2008-04-25T04:53:00.000-07:00

I have not been feeling well today, I have had a pain in my back and have been feeling a little breathless. I did think about staying home but changed my mind as I am so afraid of resting and not recovering from this. I don't feel unwell in myself but the pain is what is getting me down.I rang the German clinic today as I am seriously thinking about Chemo Embolization. I have to ask my oncologist to send the latest report by fax and I will get a call from Dr Vogel.I have heard thet there is a very good success rate with Chemo Embolization.

Thanks Theo

2008-04-13T04:46:00.000-07:00

Theo (my tumour) has been doing very well. He hasn't been playing up at all....he may even keep his job!Work has been good and my friends and team players make it all worth while.One more day to go and then I have 3 days off.I will get my blood test done on Tuesday and send off the urine and blood sample to the Dorset lab.
I am sill seriously thinking about Chemoembolization and will look into it more when I am off work next week. The link below gives more information about the procedure.

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

Well done Dawn!

2008-04-12T04:39:00.000-07:00

Congratulations Dawn
Well done Dawn who's tumour has shrunk a little. I hope it keeps shrinking and she responds well to her treatment.
She has her own Website: http://www.wigstowishes.org.uk/ Dawn was featured on the channel 4 programme "The Mummy Diaries" which was a wonderful series. It followed 5 women, all with terminal illness, unfortunatley, 3 ladies passed away, 1 was given the all clear and that left Dawn.
Dawn is having Chemoembolization for liver cancer, the Chemo is injected straight into the tumour in the liver. This doesn't affect any of the cells in the body. The treatment is done in Germany and Dr Callebout did mention Professor Vogl and said that I should think about it.
This is something I am seriously thinking of doing. Dawn has given me all the contact information and the places to stay and airports to use. She has been so helpful.
Good luck Dawn, I hope it keeps responding.

Dr Etienne Callebout

2008-04-05T04:33:00.000-07:00

On Friday Siobhan and I made our way to Harley Street and Met Dr Callebout, he was late and apparently this is normal. We were met by the Dr who showed us into his room and directed us to some chairs. He asked me to talk about the illness and when I first recalled having the symptoms. I told him it was 1994 when the scarring showed up on the lungs and 1996 when I was hospitalised for a suspected blood clot on the lungs which turned out to be the fluid again. I was offered a CT scan but this wasn't done as I was pregnant with my third child, Kieran. I consider that at this point, this saved my life as I would have had the scan and the Meso would have been detected and I would probably have had chemotherapy and may not have been here today.
I told Dr Callebout that I asked for an x-ray in 2006 as I fitted the criteria for Meso and I had just lost my dad who had worked with Asbestos.

Dr Callebout took a small amount of blood from my finger and analysed it under a microscope, I could see the cells on the screen with some little wriggly ones in between. He asked what I had for breakfast, not sure why, maybe the sugar from the cereal bar. Another thing mentioned was taking iron supplements. I am going to stop my immune defence tablets as they contain iron.I went to another clinic around the corner to get the blood test done and when Dr Callebout has the results he will be in touch with a regime. He also mentioned a Dr in Germany who was having great success with Mesothelioma, Professor Thomas Vogl. This is something I am going to follow up as there has to be something more than the procedures offered in this country.

Another thing is the T.V, it needs to be switched off between 7-8pm, to my surprise, my autistic son has taken this rule and enforced it. Well done Kieran.
After seeing Dr Callebout, I met up with my cousin, Justine, who I haven't seen for a while. It was good to see her. I will wait and see what the blood test shows up and hopefully get an insight into what I need to do to amend the cancer.