Archive for July, 2008
I find it hard to believe that tomorrow we will have been in China for two weeks. First, I have a correction to make; the city the hospital is in is Xiaoshan. The other is the name of a hotel near the hospital; I have been told it is cheap and very nice.
Sunday we went to the zoo…I do not like zoos but I did want to see a Giant Panda, who by the way takes a very nice video. We also saw ‘the lesser panda’. That night we ate out at the Teppanyaki House near the ‘New Century Hotel’. It was OK…great for meat lovers (which I am not) and those with large appetites (not one of those either).
Yesterday, all the treatments began again. At one stage I was crawling around on my hands and knees. I have to say that Andy works me hard! I did not do my supposed 30 minutes standing rather after 10 minutes I said I had had enough. Today, I will do 15 minutes or maybe a little more.
In the shower today, I used my right hand nearly as well as my unaffected hand. My left leg is much more flexible. I am walking better but still find it nearly impossible to lift my right knee.
Tomorrow, I have another SCT by lumbar puncture (that will be my third). I am having my bone marrow harvest on the 4th, God willing. So far three people who have booked for them have, after testing here, been told that are unable to have a bone marrow transplant; two people have had hepatitis and the other had insufficient lung capacity. That’s all folks…take care.
July 29th, 2008
Yesterday, I had my first stem cell transfusion by IVI. Itwas great…no pain but because of the great discomfort I had been in for the previous two days, I was confined to the hospital! Bummer for you Jessica, I had planned to buy you a ‘fruit’ parasol! Never mind darling…later.
I think my pain emanated from the standing machine. You are strapped into this connfined space with bare feet in dorsi flexion for 30 minutes. It stretches all muscles from your butt to calves. My pain was from my butt to my knees. As I arrived here with shingles on my right siatic nerve root (that were not quite healed) they think that was the source on some of the pain; the other, I believe, was because my knees were not in good anatomical position (hyper-extended). Anyway, I awoke pain free yesterday morning. The treatment all starts again Monday so it is just a case of wait and see!
Later this afternoon, we are going up the street for a pedicure, foot and leg massage…it takes an hour and costs 10 bucks (eat your hearts out my friends…no disrespect to those who read this but do not know me).
Later..
July 26th, 2008
I cannot believe I have been here a week. The same treatment again, more pain and more Advil. I am told it gets better!
July 26th, 2008
My first treatment today was wave therapy (nerve stimulation) followed by accupuncture and electrical stimulation. In the afternoon, I had physical therapy with Andy. That was an experience; but nothing compared to the half hour I spent in the standing frame ( to stretch my legs with my bare feet in a 45 degree position of dorsi-flexion). It was nearly the longest half hour I have spent!
Late that afternoon, the staff of the 20th floor and two Romanian families who were leaving the next day, hosted a party for the patients and staff. Lorenzo and Corino spent most of the day preparing delicious food. Their little girl Laura was here being treated. The other couple, Catalin & Zenovia (and their friend Adrian) prepared two short movies about Romania. The evening was great fun and a really effective way of getting everyone together and talking. At the moment there are people here from Romania, the USA, Canada, Ireland and Australia).
That night, Iwent to bed relative early as I was tired from all the activities but awoke in incredible pain at 3am…I don’t know f it was the muscle stretching giving me fascial pain or because some sleepy old nerves were angry at being woken! A couple of Advil tablets did the trick and I drifted off to sleep again.
July 23rd, 2008
Today started with a doctor’s round and then accupuncture. I must say I find the latter most relaxing…a mood to be broken this afternoon when I have my first stem cell infusion by lumbar puncture.
I was very nervous when going into the transfusion room. I had an I.V.I. insitu so I received a small dose of intravenous valium. It was not too bad at all. I returned to my room and lay flat for a little more than 6 hours. When I got up I had a very slight headace but otherwise I felt fine. I found that after two hours sitting with my legs in the dependent position that their colour remained good (rather than the blotchy, mottled colour they would otherwise be). My right hand was also straighter. So far so good! I also has a good night’s sleep (a normal trait).
July 23rd, 2008
Sunday is a day of rest. Today we went to the West Lake which is in Hangzhou city (we are in Jinjaing City). It is an incredible place; the construction of elaborate apartments nestle beside market gardens and ancient buildings, in states of both grandeur and disrepair. Cutting through this are varying sized waterways and roads that carry an assortment of life. The roads are filled with pedestrians who seem totally unaware that buses and/or cars could possible harm them. Pedestrian crossings appear more of a road design than a functional walkway.
The lake is huge and has beautiful Lotus flowers around much of its bank. People amass along the paths; cyclists abound and golf carts and boats can be hired. We went to a delightful French restarant called L’Olivier en Provence(in Shuguang Rd) and had brunch. The food was French, delcious and cheaper than we would pay at home. A three course meal, a bloody mary and a good coffee cost $35 AUD for the two of us. Needless to say, dinner was a snack.
July 21st, 2008
It looks like my last blog got cut off…I was going to say update your anti-virus programs.
I had a bit of a shock yesterday; I had to have a cardiac echo and then wear a heart monitor for 24 hours. I have a premature ventricular contraction. Thank goodness the latest research on stem cell therapy indicates it as a treatment for cardiac conditions! Consequently, my program for today was cancelled. Instead I read a great book ‘Orpheous Lost’ by Janet Hospital Turner. I highly recommend it.
There are some delightful people here; Canadians, Americans, Romanians, Irish…with a variety of conditions. Although the cardiac problem left me pretty isolated for two days, there isa real sense of ‘community’ here.
There was talk of a typhoon yesterday afternoon but all we got was a hot morning and heavy rain this afternoon. Tomorrow is a day off and we hope to spend the day at Hangzhou’s famous West Lake. Monday, my treatment begins. I have accupuncture in the morning and my first stem cell transfusion by lumbar puncture at 2.30 (4.30 AEST) after which I must lie flat for 8 hours. I am not sure yet when my bone marrow harvest is scheduled but I know that it takes 2 weeks before they are reinfused. That and another 6 umbilical cell treatments. I think I have 5 lumbar punctures in total.
My doctor, Dr Kai is very gentle. His english is a million times better than my chinese and today he told me to be optimistic. An English couple (brother & sister too) left today. He has ALS and must be very pleased with his treatment as he plans to return January.
Thanks to those who commented on the blog.
Love Marie
July 19th, 2008
We left Hobart Wednesday 15th…it was cold and there was snow on Mt Wellington. We flew Virgin to Sydney and they were great; allowing the use of my fame on the flight allowed me so much more independance. We had a 2 hour wait at Sydney before taking a Cathay Pacific flight to Hong Kong. Once again, the crew were great but we had to pat$500 for excess baggage. Seriously, you can buy everything you need here. There is a huge shopping complex a couple of blocks away. So far, we have not needed the air beds we were advised to buy.
We were met at the aiport by the delightful Lucy. She is one of the interpreters here; the others are the lovely Rebecca, Luca and Alf (who has other responsibilities too). We were introduced to the nurses and doctors (more about them later) who seem all very kind and helpful. One thing recommended to bring that is a must is a hand held translator!
The rooms are fine; the bathroom is a little small but I am getting used to it. The air-conditioning is great. I am glad we bought our USB cable or I doubt I would have acess to the net now. I would advise everyone who brings their own laptop t
July 18th, 2008
Well, simulaneously it is all very exciting and nerve wracking . There are only 11 days left before I leave for Hangzhou. I am leaving my beautiful daughter, Jessica (just 13), at home with her Grandma. This is the longest we will have been apart and that is scary enough; I shall miss her (and Mum) very much. Because she lives in the immediate moment, I do not think she has any idea of how long I will be gone. My brother and I are flying overnight to Hong Kong; a brief rest then straight on to China and the hospital. My days are filled with trying to prepare for every day of my absence here and my time there. I haave made contact with a few people who will be in Hanghou during my stay and had a pleasant telephone call from Shelley in Florida. He and his wife will be there a few days before we arrive.
July 4th, 2008
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July 4th, 2008
