We're all slowing down a bit...

I have to go through day by day so I don't forget anything. Dad arrived early hours Monday morning, the flight is long and he was tired. Unfortunately Gaye came down with Delhi belly too which wiped her out. They gave her antibiotics which she had a reaction too and made the Delhi belly much worse, she was so unwell. Lucky Dad was here to keep me in my routine with Gaye in the back ground reminding him to feed and water me! I had an IV of stem cells on Tuesday, slightly more cells than last time but I was ok. I was tired and my body ached but I didn't get the high temperature or sweats, so that was good, my body obviously was finding it easier to embrace the new cells. By Thursday Gaye was feeling much better and then Dad started to complain of a funny tummy, so then it was his turn to have Delhi belly, very considerate of them to take it turn about and not be both wiped out at the same time!! Today is Saturday and Gaye has gone to have a massage, Day is laying down watching the football and resting, give him another day or so and he''ll be his usually charming self again.

I finally had injections in my face on Thursday. Dr Ashish injected either side of my chin. Dr Geeta said she'll come and see me on Monday to see if there are any changes, if there are I will then get injections in my cheeks. I'm still getting my daily injections of stem cells but they are also giving me a large does in my veins, the nurses don't like doing this on me because my veins are so hard to find.

Let me tell you about today. Actually the story starts yesterday. I finally spoke up and told Dr Geeta that I really didn't feel my shoulders were making any progress and I think its because my arms drop out from my shoulder sockets. She told me I had to have ex rays and see an orthopedic surgeon. To my surprise it was arranged for this morning. An ambulance will pick me us up. A world war 2 ambulance would have been in better condition. Dad managed to get me in the front seat and I had to seating options, flat on my back looking at the roof or pushed forward so that I could kiss my knees! I opted to lay back. As we drove off I asked if there was aircondition but as I did I noticed there were not electronics on the dash board and so no airconditioning. Ok, no problem. As we drove along the glove box kept opening, and the driver would reach over and slam it shut, he did this several times taking his eyes off the road. I looked over my shoulder and Dad and Gaye were squashed in the back sitting on a makeshift stretcher. We went inside and the receptionist beckoned Gaye over to sign paper work, Dad asked me what she was doing and I told him she's signing permission to leave me here so you guys can go home!! After the week they've had with there health I wouldn't blame them. I had the ex-rays and we went through the same fiasco getting me back into the ambulance and back to Nutech. I'm feeling quite drained today and after my ex-ray I decided not to go to physio, I had my injections and went to bed, slept for an hour or so. Woke feeling a bit better but still drained.

The orthopedic surgeon came to see me. He pushed my arm up into my shoulder and it instantly felt better. He suggested I would need shoulder surgery as my muscles don't have a stable base to work from or grow over. When I get home I'll contact the Dr who did my scapula fusion surgery 10 years ago and discuss my options. Something else to add to the list of things I need to do, but if it gives me better stability then I have to try it. (she says with a deep sigh)

Lets get Claire to India once more

A lad in sane
PRODUCTIONS

The theatre troupe infamous for bringing strange tales
from lands and times afar, return closer to home with…

What becomes of the broken hearted?
3 One Act plays By John Grimshaw at the
The Phoenix Theatre

( Corner Rockingham Road & Carrington St in Hamilton Hill)

Wednesday 12th August 2009
Join us at 7.15 pm for a complimentary glass of wine and cheese
8 pm the plays begin!

Tickets are only $25 per person
For bookings contact Michelle Cousins 0417 965 852
Rated MA contains adult themes

Proceeds of This Production Are Proudly Donated To Claire’s fundraising efforts
Let’s Get Claire To India once more!
Please come along and support Claire’s fundraising

The Last Waltz (a drama topped with a dash of Aussie humour)
Shane Grantham is a devastated young man. His wife of five years has ended their relationship, and worse, is that she's moved in with her new lover. For Shane, The hurt, burns like a furnace. Frequent alcohol fuelled attempts to douse the flames within, fail to do so. The slurred voices in his head insist that 'he won't get over it, until he stands up, and extracts revenge on the pommy bastard that stole his missus!' And so, the seed is sown.... 'I'd like a taxi please! ... Shane Grantham! Going from Wembley to Leederville... Unit 17A, 2596 Herdsman Parade! Cheers mate!' Shane's checking his bag again, yep; he's got everything he needs. He's ready. He’s primed! For taxi driver, Kirsten Singh, this Tuesday evening offers no such grand plans. For Kirsten, this night is but another routine shift and the young man he's about to collect, another faceless passenger. A chance meeting between strangers, two men from very different worlds who on this one night discover that love has a universal appeal, and the power to bring worlds together.

White Roses (a comedy with a bloke’s sense of drama)
When it comes to relationship breakdowns, men of today's X-Y-Z generation, find themselves in a more fortunate position that did their baby boomer forefathers. Today’s broken hearted man can seek solace in a multitude of ways, through relationship counseling and men’s self-help groups. There’s government sponsored programs such as the highly acclaimed, ‘How to re-build your self esteem after she’s left you with nothing!’ In addition there are numerous books on the topic, books such as 'Men are from Mars, and how to stop looking at women through your penis!' In days gone by, your average broken hearted man had naught but his mates to turn to. And so it was, that when Rob Jackson discovered his wife of thirty years had left the marital bed, he turned to his best mate, the thrice married George 'the gun' Mulligan. Rob figured if anyone could help him get his wife back, George was that man! The play is a tongue in cheek salute to men born long before modern women had the audacity to remove the first two letters from the word insensitive.

Tissues and Wine (a comedy about women‘s dramas)
What’s a girl to do when she discovers her husband has been having an affair with her best friend? What can she possibly do to overcome the feelings of hurt and anger? Well for a start she could locate her dress making scissors, and proceed with making slight alterations to his 'signed by the entire squad' Wallaby jumper. Oh that's nice, he'll love that! Next she might chose to re-shape his precious cricket trophies into something far more abstract. Oh! That is art darling! What else? You're going to practice your reversing skills by backing over his expensive racing bike? Can there be anything more attractive in this world, than a woman scorned? What was that darling? You’re going to drive to his office, to place your wedding rings on his desk, alongside the photo of them taken at your wedding? Would you like me to help you pack your things into the car? Have you called your mother? Before you go, would you care for a small aperitif to calm your nerves? How about a dash of ‘love on the rocks?’ Our tale of love and deceit continues over at mother’s house. We’ll meet you there! Don’t be late darling!

3 Day procedure

Where to begin....at the beginning I guess! We went over to the other hospital on Wednesday around 11am. Our driver wasn't sure where to go and had to stop twice to ask for directions. Finally we arrived, hot and bothered, I signed several pieces of paper some in English and some not (which made me laugh). Up in our room the nurse came in with a plastic bag full of 'things' and left it on the counter telling me 'what you'll need for 3 days'. It was a collection of syringes, antibiotics etc Another nurse came back and wanted to put my cannula in for the drip. My veins are difficult to find at the best of times and they were having trouble. She wanted to put it in my hand but I said no, theres not way I could have that in my hand for 3 days. She tried my wrist and i said ok, as long as it wasn't where my wrist bends. I looked away while she put it in and when I turned back it was exactly in the crease of my wrist, which meant i couldn't put any pressure on it to transfer myself, so every time i had to move I needed help, I got frustrated and tried to put pressure on it but it filled with blood and I had images of it breaking in my vein.
The nurse did a test dose of antibiotics and 30 minutes later I'd had no reaction. I was taken to the operating theatre where upon arrival Dr Ashish was already in there. "I've been waiting for you" he said and I responded "well that makes a nice change for you to be waiting" and laughed But he actually got the better of me because as I looked over I saw him unwrapping a green cloth and revealing a silver tray with what looked liked utensils. He saw my face and said "i bet your scared now" and laughed. "Yes I am" I responded "and I'm really sorry for the cheeky comment, you take as long as you like" We both laughed and I felt more at ease.
I was rolled onto my left side and curled up into a tight ball. Dr Ashish injected the local anaesthetic which always stings. A nurse squeezed my hand, I looked up at her and she blinked her eyes at me, she had the kindest brown eyes, i blinked back at her and she continued to hold my hand. It took a while to find just the right place as Dr Ashish pressed around my spine, eventually he inserted the epidural catheter. It was taped all the way up my spine and a 'port' was placed on the end. I was rolled onto my back and watched him inject two syringes of cells into the port. The familiar feeling of pressure came into my lower back. I was wheeled back to my room where I had to lay on my back for 4 hours with the bed elevated at one end by one brick under the feet.
Later that night Dr Ashish came back to inject more cells. This time i layed on my right side while he injected the cells and stayed in that position for only 2 hours. It was the same thing the next morning but I lay on my left side, Thursday night I was allowed to sit up for 2 hours and then Friday morning I had to lay on my tummy for 2 hours, but this time he injected 4 syringes of stem cells. After each injection of stem cells the nurse would inject two types of antibiotics into the cannula, one antibiotic would burn and i could feel it travelling up my vein to my shoulder, I was told that this was normal and she rubbed my arm.
There was long periods of nothing to do and I wasn't comfortable transferring into my wheelchair because of the catheter in my back. Going to the toilet was a mission, the toilet was very small just over 1 meter long and about 3/4 of a meter wide, so not wheelchair standard, in fact the bathroom door was to small to get my chair through. The hospital is just very old. Gaye slept on a mattress on the floor next to me which was pretty uncomfortable.
On Thursday night Gaye went with Amy (Amy is here with her husband Louis whos having his 4th round of treat, so they've got everything all sorted now) to the night markets near by for a short walk. The markets are 500 years old and were built to provide/defend the king who was located on the same site. The market was very busy and Gaye was very excited to find fresh peas that she could shell and eat! I think it was a good experience but Gaye felt not one she needed to do again. Before leaving on Friday the nurse removed the cannular and the catheter from my back, she ripped the tape off my back as if it was a wax strip, it made us laugh, thank God I'm not a man with a hairy back!!
We were both so pleased to return back to the dormitory style hospital on Friday afternoon. The 3 days weren't bad but just difficult for access and isolating. I was back into physio on Saturday but I was quite tired. It will be interesting to see how I go at physio this week after receiving such a large amount of cells. On my first trip here I didn't have a 3 day procedure, this was my first and it was ok. I had a slight temperature one night and a little stiffness in my lower back but all considering, I felt good, I'd just like 1 day of not being man handled but as my sweet American friend (thats you Russ) advises me "suck it up princess"!!!!
We went back to City Walk mall today, 14 of us from the hospital had lunch together and it was really lovely for a change of scenery and change of food!
On return the lift wasn't working, so I sat down stairs for 45 minutes waiting for them to fix it. Eventually the ward boys and Dan (a guy from Aust) carried me up 3 flights in Cleopatra style, to discover Dan had bought us cake!!! My hero! They say a way to a mans heart is through his stomach..pffftt, the way to my heart while receiving stem cells and feeling like I'm eating for 50 million is with cake! The stem cells increase your appetite and you have to treat your body as if your pregnant and you tend to crave sweet foods. Does that mean I can be emotionally irrational and demanding too ha ha (no smart comments from previous carers or current carers considered:-)
My Dad is flying in tonight, arriving at 2am which will be good, Gaye is taking a taxi to meet him, we've made friends with a driver so we felt safe her travelling alone at that time.
Monday morning comes around quickly, I wonder what this week has install for me....:-)

So far..so good

On Saturday I was given my stem cells through an IV. It took the nurses 4 goes before they finally found a vein which would take the needle. The fluids was hooked up and the nurse injected the stemcells into the bag commenting that it was a lot of cells. It was twice the amount I would normally have. The Iv itself only takes 15 minutes, after an hour or so my right shoulder started to ache, then my hand and i was getting tired. I decided to lay down and watch a movie, after a while I felt really cold, by body ached all over, it was painful to even move my fingers. I put on a jacket, Gaye put a blanket over me and we turned off the airconditioning as I was shivering and sweating. About an hour and a half later I woke and was very hot, my temperature was 101, we called the nurse and she gave me 1 panadol, which wasn't going to go far. It hurt to move so I asked Gaye to roll me onto my side and I could feel the pressure of the bed on my hip. Tears came to my eyes as my body was shivering, I continued to remind myself why I was here and what I want to achieve....a better quality of life. All the positive words that have been shared with me came to mind and it was comforting.
After some time my temp came down to 100 and stayed there into the evening. I felt so weak and drained, my head hurt. I finally went to sleep by 9pm and slept through until 7am Sunday morning. This is a normal reaction with the IV so there was no need for concern I just had to ride through it. The nurse came early to see me and my temp was normal again 97. We took the morning very slowly and by lunch time we decided to get a taxi to City Walk, its an airconditioned shopping mall to have lunch and it was a lovely change. There is no physiotherapy on Sundays which I'm very grateful to have the break and allow my body to rest.
Monday morning I woke feeling pretty good. In fact I did the best physio session I've done since being here, some little changes in my right shoulder and right leg. I'm using the Tens machine on my feet and hands, today we noticed that my right foot is 'firing' up better, its only minimal but its something. Its all these little changes that keep me focused, its when nothing changes its harder to stay positive. So its all worth it.
After physio yesterday when i went into the injection room one of the nurses told me to go back to my room as Dr Ashish would come and give me injections in my face...oooooh..alright then! Now I know the muscles in my face are making changes and I mentioned to Dr Sudeep that I was happy about this but how many more wrinkles are we going to give me because I cant afford botox now!! He just shook his head at me :-) Dr Ashish came to see me in my room and said he'd decided not to do the injections in my face but would give it a few more days then reassess it.
Gaye made an executive decision yesterday and went on the hunt for a toasted sandwich maker. Much to her delight she found one and today for lunch we had toasted ham and cheese sandwiches, it was as if we needed a moment of silence to show respect for the sandwich which was a bit of comfort from home. I know it sounds weird but the change was heavenly.
The sandwich maker will come in handy tomorrow
(Wednesday) along with the kettle, plates cups etc because I am going back to the other hospital for a three day epidural procedure. We have to pack everything to take with us. I've not had a 3 day procedure before. The epidural catheter is left in and taped up at the shoulder so more stemcells can be injected over the 3 days. Occasionally I will sit up but same rules apply to laying on my back for 4 hours with feet up. This time they will focus lower down my back. The one bonus is that 2 other patients will be going to the other hospital for procedures so there partners/parent who are with them will be good company for Gaye. There is no Internet connection at the other hospital so I'll be out of touch until Friday....soooo until then :-)

Lets do the time warp again!!!

If you were making a movie during the war time period (WWI or WWII) the other hospital would be the perfect setting to recreate the atmosphere and location. Its not bad just different. The procedure went well. I had an epidural catheter in the base of my neck. I lay on my left side curled up into a foetal position, the theatre staff have to help hold my legs curled up tightly and my chin on my chest, its a tight squeeze. For Muscular Dystrophy it doesn't seem to make sense to use the epidural catheter however as the stem cells are injected in I feel the familiar rush of cells go up the left side of my neck and spread out into my left shoulder, this intensifies as more cells are injected in. Once Dr Ashish has finished I'm rolled flat on my back and he tilts the table to the right and so my head is a fair bit lower than my legs, I lay like this until I can feel the cells moving to the right side of my body and into the shoulder area. About 15 minutes goes by and I'm transferred onto a bed to be taken back to my room. I transfer back to my lower bed, the bottom legs are raised up using bricks and i have to lay like that for 4 1/2 hours. I slept for a little bit. After an hour i was allowed to eat and Gaye had made Vegemite and cheese sandwiches! Much easier to eat on your back than rice. Another hour passed and I kept asking Gaye what the time was, 5 minutes since you last asked Claire! Dinner came and Gaye fed me the lamb as I lay there. Eventually I was able to roll onto my right side then left and the to sitting...yippee!! We arrived back to NuTech Hospital around 9.15pm, it was still stinking hot outside and we were sweating. Didn't sleep so well that night, my head was thinking over time about my treatment and I just couldn't relax.
Woke Wednesday morning and went to physio. I felt good no stiffness in my neck. Shivani and I did our usual hour session, then back in the afternoon for my kicking and walking. That night I caught up with a patient from Melbourne whos here for 3 months and its his first time. He had a Tens machine which we put on my arms, it sends a pulse to exercise the muscles. It was a good feeling. The hospital has one which I didn't realise. I finally got approval from Dr Geeta today that I can use it on my feet (Dorsey flex er muscles) to help with the foot drop and my hands as my hands haven't strengthened up as yet. When I go back to physio this afternoon Shivani will use it.
I discovered something really positive today. I met Dr Geetas mum who is here having treatment. She had a stroke about 6 weeks ago. She's going through just what we are and she's showing improvements. You certainly wouldn't use this treatment on your mother if you didn't believe in it, I just think its a really good sign.
It finally rained last night so its a bit cooler outside. The temperature ranges from 40 - 45 degrees.
I can't believe one week has passed already, 4 more to go! (not that anyone is counting!) Emotionally I'm bit up and down but I know that's to be expected. Dr Geeta made a comment the other day at the meeting that the Australians are very emotional, much more than the Americans, there is definitely a cultural difference. Gaye is handling everything really well, shes making friends with the others and being den mother to the younger guys. Well lunch just turned up, we've ordered Subway today!!

Getting into routine...

I have to share the funny story of the nurses call button. You see it looks just like the light switches. Second day here Gaye was looking for the light switch as her room has no window and pressed the nurses button which gives off a loud buzzing noise, the familiar sound of thongs flip flopping came up the hall way, we apologised for the mistake. The next day, much to my delight Gaye pressed it again and the nurse came running to our door, by day three when Gaye once mistook the switch again and pressed the nurses button she got to the door first apologising profusely and we all had a laugh.
Sunday night we gathered in the common room to eat pizza and get to know each other better. As far as I was concerned it was call for celebration and cake was in order! Gaye went and picked up a cake (chocolate of course) for all of us to share, theres just something about food and friendship that goes hand in hand! We all come with a story to share, hope in our hearts and a warrior spirit.
Its mango season here and we have been indulging in the sweet fruit. Gaye is like a kid in a candy store! Gaye and I went to City Walk with a couple of guys from here to pick up a few supplies. A young guy Dan who's here supporting his friend has been a great support taking Gaye out to the local shops and picking up things for us, Gaye refers to him as 'the great catch' much to his embarrassment.
Physio was good on Monday, Shivani is incorporating new exercises. I stand holding onto something steady and then kick a ball with each foot at a time, you've heard of 'Bend it like Beckham' now we have 'kick it like claire' (its the cabin fever!) we're trying to improve my step length. I was exhausted yesterday and slept for 2 1/2 hours in the afternoon and then also slept well last night. I'd forgotten how full on this treatment is. I got the results back from my CK tests which show if there is muscle break down, they were 117, which is still in a good range but higher than they usually are, mine don't go above 80 so I think the small increase would explain my hand.
My day today didn't start so well. The bathroom floor is very slippery I brought with me rubber mats but they don't stick to the floor very well and while having a shower I slipped over and think I aged Gaye several years in the process! I just need to be more careful and not trust the bath mats not to move, I was ok just hit my head and stubbed my toe. The nurses came and together with Gaye they got me up again.
I'm having my first procedure today. I'll go off to physio soon, then there is a meeting with all the patients and Dr Geeta and Dr Ashish. After that I'll head over to the other hospital to have an epidural procedure after which I have to lay on my back for 4 hours with my feet elevated, its going to be a long day.

no rest for the wicked :-)

Lets start from the beginning! The flight was long but good. Arrived in Delhi at 2.00am, got our bags went straight through and looked around for a familiar face holding a piece of paper with my name on it, but no one was there..mmm...ok, lets go outside and look, nope one one there either, went back inside, scratched my head and thought i didn't bring the address or contact number, Gaye suggested we go to the Cathay office and look for a phone book, we went up the lift and into the office, unfortunately no such thing as a phone book existed. So down stairs we went and thought we'd just get a taxi, but then a light bulb went off in my head 'we're in India Claire, running on Indian time!!" so I asked Gaye to go back inside for one more look, while she did this i text my sister in Perth got her out of bed to google the hospital for an address and phone number. While she was doing this for me Gaye found Opie!!! Yeah! I need to adjust to Indian time, we got in the taxi and headed off to the hospital.


Arrived and went up to our room, same room as last time, it was stinking hot as the airconditioning wasn't on. We tried to put it on but it wasn't working, Gaye asked the wardboy but it still wasn't working, so for that night we slept in the opposite room. By this time it was 4.30am, we were both exhausted Before going to bed I asked the wardboy to hunt down my toilet frame that I'd left from last visit, crossing my fingers, he thankfully returned with it, looking a little worse for wear from being on the roof, but hey who cares its here!


I woke the next morning by the sound of banging in our room next door, I thought to myself 'they are fixing the airconditioning' if all else fails just give it a good bash!! Gaye and I started to get up at 11.00am. A nurse came to take blood from me but I was still dehydrated, they struggled and could only get 2mls. Then a new female Dr came to visit me and did a assessment after that I got up and had to be at physio at 12pm, it was 11.50 now. I had a drink of water, brushed my hair and Gaye gave me a few hand fulls of fruit and nut mix.

They had to take blood again the next day, this time I drank plenty of water, ate 2 fantails (medicinal purposes only!!) and they sat a hot water bottle on my hands, they finally got 5mls of blood from me and I only ended up with 2 bruises.

It was lovely to see Shivani's big smile, everyone was so welcoming, I felt like a celebrity! I went through my physio routine and explained what I have been doing in Perth. Shivani was happy with my progress but knew I was tired, I had my injection of stemcells and went back to my room just after 1.00pm to eat lunch and be back to physio at 2pm for walking. Gaye put on my new foot supports and shoes to walk in. Shivani gave me a walking frame with out wheels because I had to push it which is harder and works my shoulders too. Even though I was tired I managed to walk quite well. Thursday night I had my injections in each calf muscles.


I slept quite well on Thursday night, we managed to get the adjoining room where Gaye is sleeping which is giving us much more space so we're not falling over each other. Back down to physio on Friday, more energy today. What I've noticed so far is that I have slightly more strength in my shoulders, legs and face. At home I was standing and doing my arm exercises so Shivani has Incorporated this so I do new arm exercises standing and its working well. I'm not so fearful standing. There is one thing that is weaker though and I was feeling quite stressed about this before I left. About 4 weeks before arriving here I noticed my right hand was aching then it started to become weaker. Firstly my middle finger then it slowly moved out to my pointer and ring finger, my thumb and pinky seem to be ok. Shivani confirmed my fear it was weaker and in my right wrist a bit too. My heart sank, I'm so pissed off (sorry to offend but its how I was feeling) I had a cry, processed it logically (if thats possible) and then pulled myself together. I was in two minds to share this with you, but I have to be honest about my treatment, its not all going to be smooth sailing.


Dr Geeta came to see me with Dr Ashish, Dr Sudeep and a nurse. I talked to her about it and this time she has decided that my procedure will be a Cordula block injection in my neck, I will still have injections daily and Iv's. I wanted to have a better understanding of how they treat the Indian patients. Its basically the same but our treatment is more intense but they also need to have 3-4 months break between treatments, so its not like they are getting injections everyday all the time. However I did leave my return too long, it was 8 months, I won't leave it so long next time.

Today is saturday and we don't have physio in the afternoon so Shivani decided to extend my morning session. I did an hour of physio then had my injection then went back to do more arm exercises standing and walking, it was full on.
I've met lots of lovely people so far a guy here from Perth, one from Melbourne and a guy from Brisbane who's here for his second round of treatment. Geeta has set up a common room for patients to hang out at so we'll go down stairs tonight to meet everyone, share stories and support those here for the first time who resemble a deer in headlights! Its definitely overwhelming for first timers.

Until next time....Nameste