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It rained tropical yesterday and today, and the temperature has dropped to quite OK. The PT room was flooded.
Had a bad day yesterday. The LP went OK but a headache and sore back resulted in a bad evening and request for pain killer as well as taking my paracetamols. Better this morning but not up to much in PT.
Temperature nice so being wheeled to shanty town shops – a ten minute push. Wheelchair tyres soft(hard work to push), so swapped for one which squeaked every revolution. I stick out like a sore thumb as it is, so swopped back to the flat tyre one…Richard needs the exercise!!! The shops are small tin shacks. Lads playing pool under a tin roof. Stocked up on bread and fruits. Didn’t fancy living in the flats we passed by…totally delapidated looking, although there are some better ones.
If you want to live longer, then do what we are doing. Semi trapped in our room, the hours last twice as long as normal. Only 5 more sleeps to go…our grandson Charlie’s way of counting the days. There are no natural English speakers here, so company lacking.
There is no problem waking up in the morning as at 6.15, a burst of music from across the way heralds a new day, and continues for 30 minutes. Supposedly gets the nurses in good form for the day. Also been driven mad by what seemed like a child’s toy playing a loud version of the first line of ‘I went to Alabama with my banjo on my knee’ about 50 times a day. Then it plays the second line but in fact it is the first line again and doesn’t drop down at its end as you are forced to follow the tune in your head….which is very annoying/torture…try it. Also sometimes it doesn’t complete the lines. At last Richard found out it is the phone ring tune in the nurse’s station, which is cut short if they pick up the phone early. We also get a bugle call that sounds like ‘Reveille’(spelling) spasmodically – don’t know the origin yet.
May 10th, 2008
Only a week to go. On countdown now.
Had first acupuncture and further PT in common rooms with a variety of patients, all ages and conditions as this is a general chinese hospital. A bit shattered after morning PT. I am not sure that over exercising is good for MS. In the afternoon PT session, I could do very little.
Washed my hair and recovered my curly(permed) english hairstyle. I think that I prefer it to the chinese style I was given in Hangzhou.
May 8th, 2008
Not had too bad a day at all with 1 PT session, walking has been a bit better. Seem to have won the body fluid provision battle as no nurse turned up at 7am to take blood. Infact we have not been bothered with nurses all day, whereas in Hangzhou, they came and checked for blood pressure and temperature and pulse and caca every day.
Richard met up with a chinese lady, Chris, yesterday, and asked her about the 20 minute away SM. She said you can go and return for free on a bus, but a taxi was less than 2GBP per trip. So Richard said he would pay for the taxi if she would be the guide. So off they went this morning including Chris’ mum and brother who is a nerve sufferer. Richard became worried in the taxi going as he had not written down the name of the hospital, and if he got lost, then that was it. No way home. He needn’t have worried as Chris’ mum did their shopping, and Chris chauffeured him around the SM. It helps when you speak the lingo to the assistants. Thus, he has got himself a 24 pack of beers(small ones), and I have a bottle of Lindemans Chardonney. So happiness will reign tonight. It was interesting that he tried to tip the taxi driver, and Chris intervened and grabbed the tip back, and told him that tipping was not to be done in China….great!!
Richard went to the restaurant and made some selections from the trays on show, but talking to one of the Indian ladies, we agreed, that Indian cooking was way up on Chinese cooking. However, there might be a small difference between her cooking and what we call Indian cooking served up at the ‘Spice Cottage’ restaurant.
After dinner this evening, I took the air, using the wheelchair for stability(I suggested to Richard that he should get into the chair and I would push him around for a change. He politely declined). I took the lift down a level to the ground floor and did a bit of strolling around the gardens, which are interesting. There are Jack fruit trees where the large sized fruits grow straight out of the trunk and branches. Don’t stand underneath when they fall. Felt a few nibbles, which were likely to be mossies, so decided that I had done quite well, and returned to our room.
Richard said he had killed 6 or 7 as he was doing his typing, but they were hardly worth his effort, and no half pint of blood came out of them as per an Aussie one.
May 7th, 2008
Didn’t get off to a good start in the morning as a nurse arrived before 7.00 to start re-doing the body samples already done at Hangzhou, the results of which we had already given to the Haikou hospital last night. So she got sent away unceremoniously.
Our usually happy English cereal breakfast was a bit of a disaster too as the small carton of milk we had brought with us turned out to be extra sweet yoghourt. It didn’t go well when poured over our rice crispies and oats.
Finally a crowd of doctors arrived and asked how we liked it here. So I told them that it was different. They also laid it down that the rules were for body samples to be taken from all new arrivals….so there!!!
Things looked up after that and happiness was gradually restored. We have been given 2 nice upholstered chairs. We shifted Richard’s bed so that we could put the new chairs next to the window and then use the cupboard tops under the window sill as our new table. Then we got a shower mat, and I got a new OK mattress. Richard was taken to the local quaint ‘shops’ by our chinese interpreter, Maisie, complete with her sun umbrella, and delivered some bread, icecream and beer(I am sending him off tomorrow to visit the big SM although it is 20 minutes away by car, to stock us up for the 8 days to go), and the computer works!! Then had laundry turned around within 3 hours…fantastic, and we were given some DVDs, and there are 3 English speaking TV channels.
Then I had my bone marrow extracted. This is a more than half hour process and the doctor was fantastic giving me hardly any pain at all. I have read/heard of painful experiences when doing this.
Richard has just killed 1 mossie todate, and it was very small and quiet(definitely not Australian ones).
May 6th, 2008
Happy birthday, Rob. Will have to wish you a HB tomorrow…see below. Rosie’s birthday was yesterday. Could you give her a belated treat, Dav, as Richard has not been able to tell you!!!!
It has been quiet over the chinese May day holidays, except for the fireworks which kept going off in various places visible from our 20th floor window. Did a ‘bit’ of shopping. Found an ATM machine in the Supermarket to pay for it. There is a button on it for ‘English’, and you put your card and pin in, and, lo and behold, chinese money comes out. Great!
Had another stem cell LP yesterday. It went OK and feeling OK this morning. Chatted with a USA couple, Butch and Alice, where Alice has MS. They have gone down similar routes to us but no luck so far. We are all hoping for stem cell miracles. Told that the Beike stem cell activities are blessed at the Chinese Government level i.e. in suitable hospitals anywhere in China.
Learned yesterday that we are having to go to Haikou for my Bone Marrow extract and stem cell culitivation. They were trying to start to do this here, and got the OK to do it, but, in testing, one of the machines used is not working properly. As it takes 7 days to cultivate the stem cells from bone marrow, we cannot wait until things get fixed up here to catch our going home flight…hence Haikou. Hoping our luggage has not grown too much!!
Thus we had to work out how to say goodbye to all the super staff , nurses and our room cleaners here. Who to give something to individuallly and who collectively. So we finally worked it out with a big cake, chocolates, bottles of booze and envelopes.
Hard to leave our clean, friendly and sociable environment, with the super staff. Would have much preferred to stay in our nice room with a great view and wander down to the SM each day. Said goodbye with lots of photos taken by nurses and taking emafrom fellow sufferers.
Journey to Haikou with wheelchairs went OK until got off the plane in Haikou. Last off as usual. Helped down the steps, with the usual male chinese offering of his back and cling on round his neck. Again I declined. The bus to take us to the terminal had decided to park 50 metres away. Everyone else was sitting on the bus waiting for me, and the bus was not capable/allowed to drive close to the plane. I thus, in full view of the bus passengers, had to race across the intervening space. This I managed, with a little help on either side, without stopping. Well done!! The passengers seated by the door were cleared out by the air hostess and Richard grudgingly accepted a seat beside me. Well, he is getting on a bit.
Arrived at the hospital at about 10.30 after a tiring day, well sweated up in the humid tropical atmosphere. Some like it hot, I don’t. Needless to say, our new room was not quite up to the standard of our old one. The mattress was as hard as iron, there were 2 hard chairs in the room( I didn’t want to spend the next 9 days just lying on the bed), there was no table to use for eating or laying stuff on, and the shower floor was bare and slippy, and how many mossies were there, just waiting to eat me up. I must admit, we should have been flown down earlier in the day. The staff produced a softer mattress, we put down a towel on the floor in the shower, and finally got to bed at 1.30. I’m afraid this was not my finest couple of hours. BUT…the aircon is blissful.
May 5th, 2008
May day and 3 days chinese holidays. No treatment the next 2 days.
Was not good yesterday, but better today.
MS ASSESSMENT TODATE- half way into treatment. Have had 3 stem cell injections plus most days PT, ET and Acupuncture. There has been no positive progress with my MS. In fact, I am worse than I was at home. After each LP, I am not good for 2 days, and then I believe I get a bit better. I think that my problem is hoping for immediate benefits which do not come for most people during the month’s treatment here. Sticking needles in one’s spine and withdrawing and adding fluid is highly likely to have a negative effect on the body, which seems to occur for me. Thus, I have decided just to take the medicine, get home and hope the return to the home environent plus the stem cell action will give me benefits over the next 3 months. I plan to keep this blog going with my progress after I return home.
I note that I am not the only one getting a sore back from the LPs as 1 of the other patients also is suffering. Fortunately I have missed out on any bad headaches and my paracetemol has helped out well on the back soreness.
Richard reports that the 2 computers available are slow and that he can currently receive emails some of the time but not send them. 1 is down altogether at the moment.
Great dinner tonight – Chilli chicken with cashews plus separate plate of 3 veges mixed followed by papaya and icecream.
May 1st, 2008
An up and down day re legs. Face red – possibly stem cell action.
Air conditioning went on for first time – nice and cooling.
Went to SM as usual. Chinese road system is good as most of the roads are newly built. Get 2 lanes each way for main road, but also an extra lane on each side of the road which are 2 way themselves. These are for cyclists/taxi cyclists/scooters, and wheelchairs(just the 1). At traffic lights we all wait together to cross the road, while cars are allowed to turn left or right across our stream. I think we have priority. We have to watch out. The driving standard is not great with plenty of peep, peep. Only seen 1 scooter lying on its side in the road so far though. There are no crash helmets at all and family of Dad/Mum/youngster are often crammed onto a scooter.
I am prime exhibit No 1 in our wheelchair, but have got well used to it.
Most of the chinese are youngish. I think that the older ones are still at home in the rural communities, and the young ones go to the cities for work. The girls are mainly very smartly dressed and look good – a lot smarter than their UK counterparts.
May 1st, 2008
Not good all day yesterday but better this morning. Put it down to over exercising – sore legs, but it was also hotish and very humid.
Browsing clothes section of SM and a 6 or 7 year old chinese girl, as bright as a button, came up to us and said ‘Hello’. We responded. Then she asked ‘Where are you from’? We said ‘England’. Then she asked our names. Then she said ‘What do you like’. Not understanding, we asked her what she liked. She said ‘hamburger’. I said I liked icecream. She said ‘I like too’. We, and a couple of chinese, all smiled away. It was delightful.
Had Lumbar Puncture 3 – went OK
Had Carry-in meal. Chilli chicken, no salt, replace peanuts with cashews. Great. Sorted chinese food out at last.
April 28th, 2008
Overdid PT with weight put on bad leg – shattered. Don’t really think it good to overdo exercise when have MS. Not good all day
April 26th, 2008
Another beautiful sunny morning- feeling fine – day off – no activities today.
Did own PT today and did 100 small steps continuous holding on to Richard.
Went to hairdresser in taxi for wash and blowdry – included scalp massage – all for less than 2GBP and tip refused. But lost my expensive perm curls and have new smooth modern chinese style. Richard likes. Still to make my mind up.
Legs not good at hairdresser – when I’m not relaxed. Their ability comes and then goes.
Richard counted 7 big buildings being constructed from our window. We are 30mins from Hangzhou. Market garden(opposite hospital) won’t last long. Hangzhou district 8 million population.
April 26th, 2008
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