None to go
October 29th, 2007
Hi everyone, I’m starting this on Monday a.m. And no doubt Mike will finish off tonight while I’m immobile! It’s the last jab today and I must admit I’m not looking forward to it. But if it provides some benefit, then jab away! It’s been a really strange kind of week. Jab last Monday was a bit different and they had to have two goes at it as they couldn’t get any spinal fluid out the first time. You have to withdraw the same amount as you are putting in, cos there’s only a limited space in there!!. Consequently, my back was sore for a few days. During that week, we did some shopping, arranged a sightseeing venture for Sunday (yesterday) and continued with the treatments. On Thursday, the nursing staff swept in and tidied the room and told us to keep it tidy as there was to be an inspection by the military (this is a military hospital) and they wanted everything up to scratch. Not a problem. The BIG problem was when they switched off access to the internet because the military said that we “were not allowed to have itâ€. It has been a constant frustration ever since. And not only to us. There are people here who still work and have to keep in contact with their businesses at home, and that has arbitrarily been taken away from them. The only concession has been by Tony, the Beike rep who lets the patients, when possible, use the office computer to send and receive but of course this is only at night after the mililtary have gone home and before he goes home. You can imagine the level of frustration amongst us all. Especially for me, who cannot talk on the phone, and whose only method of communication is by email. Still, we only have six days to go now and are looking at packing up and coming home. So it is no longer a case of “well – maybe next week….â€. We’ll be HOME by then!!!
Yesterday we went out to see the “Strange Slopeâ€, which lies about 30kms outside the city. It is an unbelievable thing – it is a slope, only about 90mtres long which defies gravity. They give you bikes to ride so you get the sensation, and going downhill, you have to pedal like mad and coming up, take you feet off the pedals and you sail up as if you were going down!! Really, really weird. The only thing was it was FREEZING and I mean freezing. We couldn’t stop shivering, so the day was not as happy as it could have been. Last night the temp was -6 and we had snow. It was still here this morning when we woke. Adelaide weather seems very attractive to us right now.
Carer 5 report 29/10
We are back on air after USA and Aussie, (with Pommie training), reps tackled certain powers that be and succeeded in obtaining a new IP. For that we are grateful and appreciative.
Well S. has had her last jab and is having the long rest. Things went well this time only on the table for 20 mins.
We hope to blog again later this week with another update. And will include a summary of effects after treatments.
Meantime we can say that the positives have been an improvement in swallowing, more force and direction of toothpaste removal and a big increase in strength of left arm and grip. We now wait for a period of about six months to see if these pluses are maintained.
I will record here our thanks to the nurses, cleaners, doctors and Beike staff who have all given of their best to a whole lot of patients and carers with individual and some common problems. All of them have listened and acted in our best interests, and have made life here as comfortable as cicumstances allow: (Syntax on that bit of writing not the best!!), but is sincerely meant.
Keep on blogging it does help tremendously.
Bye for now
Entry Filed under: als,Uncategorized
8 Comments Add your own
1. Neal | October 30th, 2007 at 7:49 am
Hi both,
it’s a shame that I’ve only just found this blog and you’ll be leaving in just a few days. Well at least that in itself is cause to be cheery but I wish we could have done a tiny bit to help earlier.
I think you guys are fantastic! Who else would get themselves off to the depths of China of all places to seek a treatment that I suspect hardly came with much certainty. You deserve to get something from it and fingers very crossed it sounds like the early signs are promising …
We did indeed raise our glasses to you on Saturday evening at 7.30 (our time): mum, Tony, Mike, Paul, Dave, Chris, Julie, Lee, Daniel, Craig and myself. Maybe it’s too much to think it made any difference but at least there may be some comfort in knowing we were all thinking of you and desperately hoping for the best. [BTW you might like to know the winning team for this autumns FitzHenry Open of Dave, Chris and myself battled through torrid weather and inferior odds to secure victory over Tony, Paul, Lee and Daniel and were rewarded with the trophy, affectionately known as HJ, which now sits proudly on Chris's mantlepiece]
As for us, Ryan is just the best. He’s 8 months now and a real joy to be with. I’ve put a couple of small photos at http://uk.geocities.com/neal_fitzhenry/Ryan_photos.html for you to try and see. Anna is well but still plagued by the wrist injuries she picked up when he was born. Monster (the dog) is a handful, in size and in character, but lovely too. And I’m fine as ever (touch wood) and still enjoying the fruits of my ‘Element 14′ days (i.e. not working).
Mum mentioned a while back that you hoped to be visiting the uk again next year. Let’s hope things go well enough to give you the chance, it would be so nice to see you. It may be a while now before we get out to Oz again, but rest asured as soon as it is practically possible we will!
All the best for now and please keep us updated with progress. Perhaps you’ll have to start a blog from Australia when you get back?
Wishing you the very best,
Neal, Anna, Ryan and Monster
xxxxxxxxxxxxxxxxxxxxxxxxx
2. Steve | October 30th, 2007 at 5:02 pm
All done, now just the wait until you can get on the plane back home! I, that is we are so proud of your determination and courage that has been displayed over the last month, I for one would not be able to imagine having 1 injection let alone 4 into the spine ouch!! Dad you mentioned “pulses” I take it that that is a positive sign of nerve recovery? I certainly hope as does everyone who has been able to blog. It has been good to see the UK branch on here, I send a big Hello to all and sundry!, We had our first open here last Sunday, not much interest as yet , but it is still early days, we hope to sell on or before tha auction as it means that the sale is unconditional, one of the responses from the first visitor was that there were too many trees, must be from Tasmania, but come December they certainly cool the house down. Elina is going well as is Stephanie, who now has discovered her voice, and duly exercises it at regular intervals and with little volume control, beautiful nonetheless. This has caused a little concern with Nika as she believes that Stepehnie is in pain or something and starts running around her trying to help, which makes Stephanie laugh. Two weeks to go now and Yuri and Veronika fly home, it will be quite strange to be by ourselves again, may take some getting used to! Spoke to Carolyn on Sunday, she seems fine the kids are well. Make sure that you enjoy ( if you can) your last few days in China, i am sure that you will have a few tales to tell, I will look forward to hearing thm over some glasses of red. I received your email(s) 2,3 & 4 but do not know what happened to the 1st, the pizza was strange but somehow not out of the ordinary. I hope that you all have a relaxing (as much as possible) time before the flight back. looking forward to your next blog, that is if the Generals allow it. bye for now,
Love
Steve, Elina, Ned, Stephanie, Yuri, Veronika and Nika.
3. Daphne & Malcolm | October 30th, 2007 at 6:20 pm
Hello to both of you. Happy for you that the last injection has been and gone…now on the home straight!! Received 2 of the pictures – one of the pizza with the funny little egg in the centre lol (I thought hello hello Mike is sending out pictures of his epicurean delights) and one of both of you at the hotel for your anniversary. The “slope” sounds intriguing, there is a hill up around Carrieton that apparently does the same thing but with cars. Anyway, glad to hear of the improvement and hopefully see a few of the pictures when you get home. Been terribly windy here lately…love to both of you
4. David and Carolyn | October 30th, 2007 at 7:31 pm
Not long now and we all wait with great anticipation to see you both again. Connor and Issy are so happy that nanna and gump will be back in townso we can visit regularly again after school. Also so very happy that you managed to hear my hello on ABC radio today, mind you I was quite nervous because you never know with matt and dave how they are going to respond to their ‘soap box’ callers, so I was glad that they were nice!! You could always text them to let them know that you heard. their number is 19922891. The slope sounds amazing and you are right DB would be fascinated as would the kids I’m sure.
Have a good couple of final days and good flights home and we’ll see you at the airport.
Love to you both
Carolyn and co
xxxx and a lick from the black monster
5. Pam and Mike | October 31st, 2007 at 1:34 am
Just read your last blog re ‘amazing slope’ as I am heading off to airport and there is a definite change of mood in writing – must be the anticiptation and excitment of coming home. Will see you there with welcoming committee.
love from the osheas (two in UK and two in ADL)
6. jody hollister | October 31st, 2007 at 12:34 pm
Keep up the good work guys, sounds like they are keeping you on your toes, hope you made the inspection!! Terrific to hear of your improvements Shelagh, I pray for even more for you. How did you go with Drew ask the Bekie staff what time he arrives, they will know. I hope you get to see him. Love to you both.
Love Jody
7. Suzanne | November 1st, 2007 at 7:52 am
Hope you have a safe flight home looking forward to catching up with you in the coming weeks.
love to you both.
Suzanne and Co.
xxxxxx
8. terry & Maureen | November 4th, 2007 at 4:32 pm
Hi Guys,
We are guessing that by now you are on your way home, and hope that the journey is a good one and not too tiring. We bet that there will be a rapturous reception awaiting you when you land. Now relax in the love all your friends and family will shower on you and let the stem cells do there work over the coming months. Will write more when I can sit on a chair long enough to do so. Our love and prayers will be winging their way over to you.
Love Terry & Maureen xxxx
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