Tea Gardens (Oz) and Hallwangen (Germany)

May the stars carry your sadness away,
May the flowers fill your heart with beauty,
May hope forever wipe away your tears,
And, above all, may silence make you strong.

Chief Dan George
American Indain




More than a month has raced by since my last post. As usual full of ups and downs. I will do a quick fill in before the new start in Germany.

Early December we headed off with the dogs (left the cat with Louise, our wonderful house sitter) to Hawks Nest, about 200 km north of Sydney. There are actually two villages there - Tea Gardens on the Myall River, which is where my parents live, and then Hawks Nest across the Singing Bridge. It lies on the east side on the ocean with a gorgeous beach, on the south west side on Nelson Bay with its dolphins and on the west side on the Myall River. It is great because if it is windy on the ocean beach we can go to the bay and swim there where it is sheltered from the north easterly winds.

I hadn't seen my parents for about 8 months so it was wonderful to see them. The three weeks there went by very quickly. The house we had rented was flea infested so we were able to choose another house that was available but it didn't have any fly screens - not good if you want fresh air. We ended up in a lovely house in Tea Gardens near the river. As it turned outI spent a lot of time in bed so it turned out to be really comfortable with lots of fresh air and a short walk to the river. Just after our arrival we had dinner at a local restaurant on the river with my parents, very enjoyable.

Chemo therapy continued with a day trip back to Sydney, very tiring for Glen driving and for me feeling unwell from the chemo. Meantime I had also started Thalidomide and Artesunate which is an anti malarial drug that was tested effective in the Greek blood test results for promoting cancer cell death. I was giving myself the artesunate by intramuscular injections three times a week. I am still on monthly Zometa for bones as well as intravenous vitamin C twice a week, increasing the dose from 30g to 45g. Managed to get in a few dinners with my parents as well as lunch and we made them Christmas lunch. That went well other than mum had a little turn and we had to call the ambulance. It all turned out ok in the end so that was good. Gave us all a scare, especially mum. The combination of the thalidomide, Artesunate and the chemo Gemzar made me feel pretty unwell so we didn't get to the beach as often as we would have liked. When we did it was beautiful. I swam in the ocean one day but my legs went all rubbery from jumping over and under the waves. On the bay it was a bit easier but there is really nothing like swimming in the surf, it is so invigorating.

We returned to Sydney on the 26th of December and on the 27th we went to a friends 50th birthday down in the Royal National Park in the south of Sydney. It was at a lovely little cottage in the bush and right on the water. Enjoyed catching up with some friends as well as the beautiful scenery. I had more chemo on the 28th. Had contacted Dr Jacob by then and had decided to stop thalidomide and Artesunate so that I would be well enough for the flight to Germany on the 4th. Even so things didn't go as well as planned and we had to cancel the New Years Celebration we had planned with friends on the foreshore of Sydney Harbour to watch the 9 pm fireworks. Just as well as on the 31st I had severe abdominal pain and ended up in hospital for a few days. Great to get iv pain relief and the ultrasound and CT scan I had while there showed no reasons for the pain. Deduction was that it was probably biliary inflammation. Went home again on the 2nd of January feeling weak but otherwise much better.

The good news while in the hospital was finally getting the second opinion on the PET scan - NO detectable tumours!!!! So all the 15 visible tumours are gone - wow. Great way to start the new year. The blood results from Greece showed there are still lots of active cancer cells in my body so that will be the challenge for the next lot of treatment.

We left for Germany on the 4th January and the flight went much better than expected. They moved us to better seats and we got quite a bit of sleep and it was only about 1/2 hour stopover in Singapore. We got to Frankfurt at about 5.30am and were in our little red Kia rental car by about 6.30am. The temperature was minus 11 degrees centigrade and there was much less snow than we had expected. Glen got us on the autobahn before I had even got the satnav working. The roads were clear of snow but the countryside and houses had a nice white layer on them so it was very pretty especially once we got off the autobahn and into some more forested hilly country. It was dark till about 7.30am when it started to lighten up but was not fully light till after 8am. We stopped at a petrol station and got a lovely hot chocolate and a nnot so lovely sandwhich. The autobahn was just as we remembered. We would be travelling at 120 km/hr and cars were passing at at least double that speed. Incredible. Once we were off the autobahn we travelled along some quite narrow roads that were very picturesque. I must have put in the wrong road in the satnav because we ended up in a little lane with no houses, buildings or anything really and the satnav said "you have reached your destination". Well not quite. I reconfigured the satnav and we were soon at the right place. Herr & Frau Ziegler were very welcoming and our apartment was a pleasant find, very spacious. The lounge room is positively huge and there is a separate kitchen/dining room, two bedrooms and a spacious bathroom with a large bath as well as a shower. We were very tired from the 22 hour or so flight and then the 2 1/2 hour drive. A hot bath was very welcome. We walked to the clinic, a very pleasant 500m walk through the snow covered street. On arrival we saw some familiar faces but I had no treatment. Dennis, the head nurse, who we knew from Bad Wiessee, gave us a tour of the very substantial clinic. It is all very nice although the pool is not yet ready for swimming. We went back to our apartment and managed to stay awake till about 6 pm and then were out for the count.

On the 6th January I had the antibody treatment, Removab. It took 9 1/2 hours to infuse. We ended up having lunch at the clinic, the food was great. Reactions to the antibody are expected at about 6 hours but I still had no reaction at 9 1/2 hours so we went back to the apartment. An hour later the reaction started - not very nice. Severe abdominal pain, nausea, headache, joint pain. By 9.30pm we had to ring the clinic. The mobile phones didn't work so Glen had to go upstairs to the Zieglers and they rang. I ended up back at the clinic and got some blessed relief for the pain with an iv infusion. Spent the night and till 5pm the next day in the clinic hospital room. Apart from feeling extremely unwell, although with a lot less pain, the room was very nice. The view was of a lovely blue spruce in the foreground, then some snow covered rooves and in the background a gently sloping hill with snow covered meadows and pine trees.

The plan was for me to have hyperthermia treatment but that has been ditched as it will be too hard for my body to cope. I will be having another antibody treatment early next week at double the dose I had this time. Then next Saturday I will be having the vaccine which made me very sick last time so I expect something similar this time. This will be the third vaccine I have had made fromt the tumours taken when I had the double mastectomy in May last year. We will stay at the clinic overnight for the antibody treatment as a precaution. the second injcection is not supposed to cause as bad a reaction at the first but I seem to be a bit out of the norm for a lot of the reactions anyway. If I get pain I will be able to get relief that much faster.

Today I am still nauseous have a headache and very tired. My eyelids are very swollen but improving a bit. Treatment for the headache and nausea don't seem to last very long and I still also have a slight fever. Hopefully I will feel better tomorrow. I have also spoken to the doctor who gave me the stem cell treatment in Bad Wiessee, he is very pleased with my progress in terms of genetic predispositions of the cancer cells so that is good news as well.

So now I will try and enjoy the environment as much as possible and remember the treatment that makes me feel unwell is making the cancer cells even less well.

Thriving & surviving

Linda