Frankfurt & Bad Wiessee

Courage does not always roar. Sometimes it is a quiet voice at the end of the day, saying...."I will try again tomorrow."
-Mary Ann Radmacher


Frankfurt went surprisingly well. We had no plane delays so got to the hotel two hours before my appointment for the PET scan. Had a bit of a rest then walked to the hospital. More than half the walk is along the Main River with a cycle and walking path, green grass and trees. Saw some lovely coloured geese on the way and white swans on the way back. PET scan place was hard to find and we got there half an hour late, then it took about 3 hours. I got an injection including a diuretic then had to lay still for an hour (other than going to the toilet every 10 minutes).

Next day we walked to the hospital again for the MRI and trans arterial liver emobilisation with chemo drugs. We saw Professor Vogel prior to the procedure to find out the results of the PET scan. He was in a hurry and first said that there were 3 lesions, then 2 lesions. I was pretty nervous as the last one had been so painful, so I wasn't fully focused and also knew we would talk to him again after the procedure.

In any case this time the embolisation was much easier. I was in theatre and hooked up to the pain relief anti nausea drug getting quite sleepy as there was some sort of delay in with Prof Vogels arrival. More time for the pain relief to work. He then gave me the local anaesthetic in my groin and then disappeared for another 10 minutes. This was great because by the time he came back I had had three quarters of the bottle of pain relief and the local anaesthetic was working well (except for the skin, I still felt the incision with the scalpel). Only felt a short period of liver pain during the procedure, when the chemo was injected. Other than feeling very sleepy I was fine. There was some bleeding post the procedure so the nurses took turns in putting pressure on my groin. An interesting experience. They then put a pressure bandage on which I had too leave in place for 24 hours.

I then had to lay still flat on my back for 4 hours, only moved to have a CT scan to make sure that all was well with the liver after the procedure. By this time I was on the third bag of fluids and was desperate to go to the toilet. I was lying in the corridor at reception at the time and after screeching for attention I was told nothing could be done but I was about to be taken back upstairs to the ward. Fortunately that was true or I would have had to either wet the bed or get up and walk to the nearest restroom. I had to use a bed pan instead. Oh well, that's life in a hospital I guess, I am lucky I am not in that position very often.

Afterwards we went down and saw Prof Vogel. This time he said he could only find one lesion on the PET scan which he said was only really useful for bones and not other tissue. The one lesion was on the sacrum, (I had not had one there last July at the first PET scan) and he wasn't even convinced it was a tumour but could be some inflammation. He also said there were no visible lesions in any lymph nodes. He said PET scans were really only good for bony lesions. The liver had not had any uptake either. By this stage I was getting more and more confused. I asked him to show me the PET scan, but he went too fast past anything other than the sacrum which definitely had a flare. He also showed the previous MRI and the current one and showed the metastasis there, it was not much smaller than the last one, as far as I could see, but he said it was significant. I foound the whole episode totally confusing. I was not mentally compus enough to ask him if that was the lesion he treated last or one of the three he treated first and if it was the one he treated today. He said I needed to talk to Dr Jacob about the results and subsequent treatment which may be more chemo or maybe laser treatment. When I asked what that involved all I got was that Dr Jacob would explain but that it was direct to the liver through the abdominal wall and not through the femoral artery.

We were planning on getting a taxi back to the hotel but it was a beautiful evening, still a bit of sun and warm. so we checked if it would be ok for me to walk and when I got the go ahead we ventured out at a very slow pace. The sun was just setting behind the high rises, there were people jogging, walking cycling, having picnics on the grass, rowing, dragon boating etc. It was lovely. We went past a sushi place and Glen bought dinner while I continued to make my way along the river. It was physically hard but emotionally and spiritually great.

We slept in this morning and had not had breakfast when Peter came to pick us up for the trip back to Bad Wiessee. Glen was still in the shower. We packed our bags and took them out to him and he was very good about waiting for us to have a quick breakfast. Fortunately the 4 hour trip to Bad Wiessee was uneventful and Peter dropped Glen off at Heimgarten Gastehaus with the luggage and took me straight to the clinic.

Aleen and Christoff were there and gave me a very warm welcome. There were still two patients on drips both of whom I knew and I sat next to one and we got each others updates. Aleen started me on some drips and brought some tablets over and I was truly back in the clinic.

Dr Ursula Jacob came and chatted and thought I looked much better than when I left a month ago. We discussed the results and I explained about my reservations re what Prof Vogel had said. She said she would look at the scans (she had to ring and get them to send her a copy of the PET scan) and also send them, including my one from last year, to a colleague who was a specialist in PET scans for him to look and give an opinion. She will look at my MRIs tomorrow. Potentially very exciting, she said if it is true that I only have one tumour left, the one in the liver, she will throw me a party. That would be a bit of fun as Dr Fluhrer will be there as well.
Anyway it will take some time for the PET scan to do the rounds.

We are now sitting in the dining room at Heimgarten as that is the only place we can get internet. Our room is lovely, facing west so we get the afternoon sun. We are at the clinic in the mornings so it suits us. After a week we will get an apartment. Meantime we will get breakfast provided, we will probably have lunch at the clinic restaurant.

Thrive and survive

Linda