tie a knot and hang on.
- Franklin D. Roosevelt
The clinic organized a lovely excursion for about 8 of us patients and carers to a castle about 50 km away. We were very lucky with the weather as we had rain on the way there and back but not while we were at the castle. There was a freezing cold wind but we got a few snippets of sunshine. We didn't leave the clinic till after 2pm as most of us had to finish our infusions first. It was a pleasant trip through the countryside with lots of fields of bright yellow canola flowers blooming and passing through some lovely old villages.
We got a view of the castle some distance away because it is on a hill in the middle of rolling fields with forest on the slopes on the actual hill leading up to the castle. Our van dropped us about 2/3 of the way up and then we caught a little shuttle bus the rest of the way. Not as nice as the horse and carriage ride we did when we went to Neuschwanstein castle, a few years ago in Bavaria, but through very similar forest of mostly beech trees. We were out of the Black Forest area which is mostly pine trees. A very nice contrast to the very dark pines, certainly can see why it is called the 'Black' Forest.
The castle was spectacular. It was much bigger than I had expected and could really get a sense of defenses and opulence. Apparently this is the third castle on this spot. The earliest mention of the first one dates back to 1601 but was destroyed by two brothers fighting over the property after a siege in 1423. In 1454 rebuilding was commenced and via various owners sections were added particularly fortifications. It later became neglected and turned into ruins by the early 19th century. Prince Frederick of Prussia decided to renovate and eventually created one of Germany's most imposing castle complexes in the neo Gothic style. It was badly damaged in earthquakes in 1970 and 1978. Maintenance and renovation costs are now covered by entry fees.
It is certainly an impressive, interesting and beautiful structure with wonderful views over the surrounding countryside. The entry to the castle is via a fortified circular road with two drawbridges and battlements. The entry to the main courtyard is gorgeous and looks like something from a fairytale.
The first entry into the main building was a beautiful little chapel with stunning leadlight windows and blue and gold ceiling. We then went on a guided tour as it was the only way to get into the main interior of the castle. This turned to be initially very annoying as it was in German but once I stopped taking myself too seriously we hung back and enjoyed the beauty and history of the interior in our compulsory slippers (presumably to protect the imported Italian marble floor tiles as well as some beautifully inlaid timber flooring).
The interior was interesting and some of it quite beautiful. Views from the windows were amazing and certainly would have been strategically very helpful. The enemy could be seen coming from a great distance. Difficult in a siege and I think there were two in it's history that were recorded both lasting about 8 or 9 months. We also went down into what we thought were the dungeons but were actually store rooms. Interesting too as some of the stonework was from the original castle but it was colder than a fridge down there.
Yesterday I had a hyperthermia treatment. First I had to get in a hot bath which is pleasant for about the first 3 minutes then most unpleasant but got my temperature up to 38.4C. Then into the infra red hyperthermia tent with rectal thermometer, nappy, ecg leads, blood pressure and heart rate monitor. That gave me a bit of an idea of the fun to follow. The aim was to get the temperature up to at least 39C but preferably 39.2C. By 39 I was getting uncomfortable, by 39.4C I was ready to leap naked out the window, rectal thermometer, nappy and all just to get some relief from the heat. I was given intravenous valium a couple of times but it had no effect. The nurse took me out of the tent then and I thought 'great I can cool off'. Nooooo. She wrapped the now collapsed tent around me to try and keep the core body temperature up as high as possible for a further 3/4 hour. The insulation from the collapsed tent was quite heavy and very effective at stopping any sort of cool down. I think I lasted about another 10 minutes. 'Get me out of here!!' Even though my heart rate only went up to about 105 and my blood pressure was pretty good I felt like my heart was really pounding and I was feeling quite nauseous. The irony of course was that within about 15 minutes I needed something to warm up. I slept better last night than I have for about a year. So it did some good. Hopefully it also stimulated my immune system and de-stabilised some cancer cells.
Currently I am on the Removab infusion. It has been 6 hours and no reaction so far despite the fact that the dose was again doubled. When I have responded it has been at about 8 hours so I am still hopeful. Staying in the clinic overnight just in case. Still in the infusion room now as the internet is better than in the hospital rooms.
It is now the next day and I have had no reaction to the Removab clinically or on basic blood test checking blood counts and liver. Meeting with the doctors planned to reassess treatment plan. Mornings at the moment are nauseous and afternoons/evening are headachy.
Still waiting for more detailed blood results and bone marrow test. Really would like to get that before the weekend as if bone marrow is clear will need to organise trip to Suttgart before we leave for Bavaria on Wednesday.
The clinic organized a lovely excursion for about 8 of us patients and carers to a castle about 50 km away. We were very lucky with the weather as we had rain on the way there and back but not while we were at the castle. There was a freezing cold wind but we got a few snippets of sunshine. We didn't leave the clinic till after 2pm as most of us had to finish our infusions first. It was a pleasant trip through the countryside with lots of fields of bright yellow canola flowers blooming and passing through some lovely old villages.
We got a view of the castle some distance away because it is on a hill in the middle of rolling fields with forest on the slopes on the actual hill leading up to the castle. Our van dropped us about 2/3 of the way up and then we caught a little shuttle bus the rest of the way. Not as nice as the horse and carriage ride we did when we went to Neuschwanstein castle, a few years ago in Bavaria, but through very similar forest of mostly beech trees. We were out of the Black Forest area which is mostly pine trees. A very nice contrast to the very dark pines, certainly can see why it is called the 'Black' Forest.
The castle was spectacular. It was much bigger than I had expected and could really get a sense of defenses and opulence. Apparently this is the third castle on this spot. The earliest mention of the first one dates back to 1601 but was destroyed by two brothers fighting over the property after a siege in 1423. In 1454 rebuilding was commenced and via various owners sections were added particularly fortifications. It later became neglected and turned into ruins by the early 19th century. Prince Frederick of Prussia decided to renovate and eventually created one of Germany's most imposing castle complexes in the neo Gothic style. It was badly damaged in earthquakes in 1970 and 1978. Maintenance and renovation costs are now covered by entry fees.It is certainly an impressive, interesting and beautiful structure with wonderful views over the surrounding countryside. The entry to the castle is via a fortified circular road with two drawbridges and battlements. The entry to the main courtyard is gorgeous and looks like something from a fairytale.
The first entry into the main building was a beautiful little chapel with stunning leadlight windows and blue and gold ceiling. We then went on a guided tour as it was the only way to get into the main interior of the castle. This turned to be initially very annoying as it was in German but once I stopped taking myself too seriously we hung back and enjoyed the beauty and history of the interior in our compulsory slippers (presumably to protect the imported Italian marble floor tiles as well as some beautifully inlaid timber flooring). The interior was interesting and some of it quite beautiful. Views from the windows were amazing and certainly would have been strategically very helpful. The enemy could be seen coming from a great distance. Difficult in a siege and I think there were two in it's history that were recorded both lasting about 8 or 9 months. We also went down into what we thought were the dungeons but were actually store rooms. Interesting too as some of the stonework was from the original castle but it was colder than a fridge down there.
Currently I am on the Removab infusion. It has been 6 hours and no reaction so far despite the fact that the dose was again doubled. When I have responded it has been at about 8 hours so I am still hopeful. Staying in the clinic overnight just in case. Still in the infusion room now as the internet is better than in the hospital rooms.
It is now the next day and I have had no reaction to the Removab clinically or on basic blood test checking blood counts and liver. Meeting with the doctors planned to reassess treatment plan. Mornings at the moment are nauseous and afternoons/evening are headachy.
Still waiting for more detailed blood results and bone marrow test. Really would like to get that before the weekend as if bone marrow is clear will need to organise trip to Suttgart before we leave for Bavaria on Wednesday.
Surviving and thriving
Linda
Thank you for keeping us posted & Good luck with everything!
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