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.
Friday 30 May 2008
Tuesday 27 May 2008
All going well
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 !
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 !
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 (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.
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.
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 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.
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.
Friday 23 May 2008
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.
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.
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 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.
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.
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 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.
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.
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 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 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!!
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.
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 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.
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.
Wednesday 14 May 2008
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. 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.
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.
Wednesday 7 May 2008
A 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. 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.
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.
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