4th and final procedure

Laying in bed the other night with Sabine by my side I thanked her for coming with me and being such a great support, I apologised for being grumpy sometimes but I'm human and I make mistakes. I know every parent thinks there child is the most special, but just work with me for 1 minute, I said to Sabine 'out of all the little girls in the world how did I get the one that was the most special?' and she responded ' Because you have a disability mum God knew you needed someone just like me' Out of the mouths of babes. Both mum and Sabine have worked really well, we've had our ups and downs but that's to be expected, I love and appreciate there support :-)

On Wednesday we went to the other hospital for my final procedure which was an epidural catheter into my back for 2 days. I was wheeled into theatre, transferred onto the table, rolled onto my left side and curled up into a tight ball 'assume the position' I was thinking. As you can see in the picture the catheter was taped to my back and a port was put at my shoulder to administer the cells. Once back in my room I layed on my back for 4 hours with 2 bricks under the foot of my bed to elevate me. I love it when we discuss the 'brick measurement system' with other patients, how many bricks did you have 1, 2 or 3!

Because the procedure was shortened by 1 day Dr Ashish gave me more cells each time. Sometimes I could really feel pressure building up in my head like when you are landing in a plane. The first lot of injections focused on my middle section and it was almost like when you get a stitch playing sport in my chest and tummy, but this passes after about 5 minutes, so I'm not worried anymore.

In the evening I rolled onto my right side, then the next day my left side then the grand finale was on my tummy. Each time I lay still for 2 hours after the cells had been injected.

They have taken a slightly different approach this time and I'm so grateful that Dr Geeta and Dr Ashish try something new with me. I've had a lot more injections this time, 2 in the morning 2 at lunch and 2 in the evening focusing on my shoulders, biceps, triceps, hands, face etc Injected directly into my veins and each week I've had an infusion, plus the 4 procedures so you know what, I think my cup is full!

When I return home I need to be more careful riding my bike. As excited as I was that I jumped 2 levels I actually had done some damage to my calf muscles so luckily now they are feeling better, I'm so stupid sometimes I just got excited that I could do something new and pushed myself to much. So I'll focus on lighter level and less time, physio 3 times per week, hydrotherapy 2 times a week and OT once a week - think that should cover it!

I actually feel different coming home this time. In the past I haven't wanted to leave but I feel like I've grown in some way, maybe because i understand how it all works and I'm giving everything I can. I've had some small changes in my shoulders and I'm so excited about getting home, living life and letting the cells grow.

Sabines performance Nutech Mediworld

On Friday Nutech Mediworld celebrated its 3 year anniversay. Dr Geeta put on a huge party, the Prime Ministers wife was invited and the staff put on dance performances. Sabine was asked to dance and said yes. I was worried that she'd get stage fright....oooh not my girl, she had the crowd cheering for more, every time she wiggled her hips they cheered louder, she was amazing and I was so proud of her confidence. I've had nothing but praise for sabines ability to fit in and hold a conversation with any person of any level. In fact when the staff come to check on me the next question is 'where is Sabine'? Several have suggested to me that I can't return with out bringing her back with me. Here is just 1 minute of her performance.

Lollies or Chocolate?

Picture of Sabine helping the nurse take my blood pressure.
I had my procedure on Monday as planned. I was wheeled into the theatre to see Dr Ashish and he asked me which shoulder I'd like to have injected, how on earth could I make that decision, I wanted both arms!! It was like trying to choose between chocolate or lollies! He went on to explain that he would be injecting both but just 1 shoulder at a time, ooohhhhh, alright then! So I decided on the right. Dr Ashish injected through my underarm and as he hit the nerve I could feel my hand jump. He then injected the local anaesthetic and then followed with the stemcells. It was all over in 15 minutes. I was put back in my chair and taken to my room where I had to lay on my left side for 1 hour. My arm was so numb, just like when you've been asleep on it, 2 hours went by and it was still numb, I started to worry abit. I waited another hour and still couldn't move my arm or feel anything so I called the Dr on duty and she explained that the anaesthetic would last for 8 -10 hours! I didn't go to physio in the afternoon and just decided to rest, I felt quite wobbly on my feet even though it was my arm that was numb. It actually wasn't until the next morning it felt better. I think it will be interesting to see what changes occur over the next few weeks after this procedure. Tomorrow I will be back into theatre for another procedure, this time on my left shoulder. Next week I'm on the theatre list for a 2 or 3 day procedure at the other hospital. I found last time 3 days was exhausting so Dr Ashish is thinking 2 days will be better. Its not like I'm missing out on less cells as they are injecting more this time than ever before, intra muscular and also large injections just straight into the veins.
So I guess the question on every ones lips, 'are you feeling anything'? I walked today a little further (no burning at all in my calf muscles or spasms in my left calf) and Shivani has introduced a new exercise where I stand and put my hand on a wall wheel. I wanted to put a weight on it today as I'm just pushing the weight of the wheel which is very little, but she said no, so I asked for just a little bit more weight for just 5 repetitions instead of the whole 10, but she said no, so how about just 5 more pushes of the wheel to be 15 and she finally said yes!
I think my right shoulder is getting a bit stronger, but that's while I'm here and getting the cells the real test comes when i get home back into life doing more things for myself and no stemcells.
Todays Wednesday and I'll take Sabine to yoga when she returns from school, she just loves yoga so looks like I'll have to find classes when we return home.
Thank you so much for the emails and comments on my blog, its so wonderful to have contact from home, I appreciate it more than you realise xx

Just keep swimming!

To express how I'm feeling I'll quote a line from the movie "Finding Nemo: - 'Just keep swimming, just keep swimming' Thought that was better than trying to speak whale! I had my first procedure on Thursday it was a Cordral block which Dr Ashish is now doing at this hospital. I had this procedure on my first visit and it was extremely painful, lets just say I wasn't going into theatre with out a local anaesthetic and Dr Ashish agreed - phew! It really is just a glamorous procedure (she says tongue in cheek!) I lay on my tummy with a pillow under my pelvis, bum in the air slightly and Dr Ashish injects the stem cells into the base of your spine, all I needed was an apple in my mouth and I could have been a Christmas pig!! No pain this time and the theatre staff transferred me onto a bed in a room on the 3rd floor, 2 bricks under the feet of the bed to raise it up and I lay there for 4 hours, with Sabine right next to me, on top of me, feeding me tea through a straw and biscuits too, she was very attentive and caring. I've added the picture. I felt fine the next day so lets just see what the cells can do for me.

Sabine started her first day at an International British school on Thursday, she did 3 hours then Friday she attended 10 - 3.30 and absolutely loves it. I was bit apprehensive but she kept nagging me and so I let her go and it was well worth it. Shes doing all her homework and learning Hindi then in the afternoon she participates in craft classes, so shes back there again tomorrow (Monday)

I had another IV yesterday and had a high temperature (100.5) and aching body, I really hate that feeling but I know in a few hours it passes, so Sabine curled up in bed with me ate popcorn and watched a movie. I had a big cry Saturday night (once sabine was asleep) my body felt really tired after the IV, tired, sore, angry, sad....so what else to do but just take a minute to feel the emotions and then move on from it, trying to welcome the new stem cells into my body so they have the best environment to grow.

I was feeling better today so we went to City Walk to have lunch at Spaghetti's and do some shopping.

Tomorrow it all starts again and I will be having another procedure they will inject into the Brachial Plexis, I had to google it as I had no idea! Its something to do with the shoulder, as you can see I'm still not quite clear but I'll know more tomorrow. Tonight the nurse will inject into the palm of each hand (you know that fleshy bit near the thumb) hopefully that will help my hands. Actually the other day the nurse came in the morning with 2 injections and asked where did I want them? I don't usually get a choice so I was excited and confused, so many muscles so little time!! Decided to go for the Dorsiflex Muscle, its the muscle that brings the foot up when you step so you don't trip over your toes, which I have to wear ankle foot orthotics to prevent this. I've never had this muscle injected so lets see what will happen - we can only try :-)

Another day in paradise ;-)

Sabine and I at the Taj Mahal

It was a long day but it was worth it to see the look on Sabines face. Who better to see The Taj Mahal with, a monument to Love, than my beautiful daughter (and my mum too)

Ok, enough of the mushy stuff! Every morning I've been receiving injections in both shoulders and on Sunday I had an injection in the palm of my hand, near the padded bit of the thumb (if that makes sense!) which was rather an unpleasant feeling but lets hope it helps. Dr Ashish injected my face yesterday this time about 1cm above the corner of my lips (each side) hopefully this will make my smile a bit straighter. On my first trip I met a guy from Perth, Matt and his mum Marilyn and he is here at the moment for his 3rd round of treatment. Marilyn mentioned to me that she noticed my face had changed, it looks different, so thats good.

I've been working with the OT each morning which has been great, shes really working intensly on my hands and my face (its a bit like shes massaging my cheeks and it makes Sabine laugh with the funny faces I'm pulling!)

I'm still doing the same routine with Shivani and in the afternoons too, standing at the wall and reaching up as high as I can, then kicking a ball while standing (I gave to hold onto something) then walking.

I'm told that I will go for a procedure this week probably just a 1 day. Nothing else to report, no news is good new, I guess. Oh..there was one thing yesterday we had journalists from CNN and ABC TV and a couple others for a press conference as Dr Geeta is releasing a book on her findings from 75 spinal patients, I wasn't part of the interview because I have MD and really I'm discovering this treatment works much better for spinal patients, its only a 'bandaid' for someone like me, but at least this bandade has 'The Wiggles' on it so every time I look at it, it makes me smile and I have hope. You just can't bend over and take it every time life tries to screw with you and life has a way of challenging everyone, I have to remind myself constantly of that when I feel like a little girl stamping her foot who just bloody wants what she wants.

So far mum and Sabine aren't sick wooohooo!!

Back on track

I'm pleased to say I'm back on track with my walking, (my confidence is building...phew!) even though when I'm standing I still have a burning sensation under my right foot and up the calf muscle. The muscle has grown in strength and so its quite tight, but the more I stand on it and Shiviani helps me to stretch it gets better. Today I started with an Occupational Therapist, she is new here. She just did an assessment on me today and on Monday will be working on my hands and arms, so I'm looking forward to adding something new each day ontop of the 2 physio sessions. I'm actually starting to feel (now don't get excited just yet!) some changes in my right shoulder. When I travel I use a manual wheelchair which doesn't have arms. After a while both shoulders ach because my arms almost hang out of the shoulder socket and this is uncomfortable. I'm noticing this time that as I sit I'm not getting that same aching feeling. Also in physio when I'm standing I'm doing arm exercises where I raise my arm outwards and it is rising up a bit higher and not quivering so much, which is good as it gives me something to work with. The changes that take place will just be 'bit by bit' and I find that in itself a challenge.
I've been talking to the other patients and its been a great emotional support, especially how they cope when they return home after treatment and they go through the highs and lows just like me. As I described it, I'm just like a duck, smooth sailing on top but I'm paddling like shit underneath just to keep a float!!
I've just had an IV of stem cells so I'm waiting for the affects to kick in, mum is down stairs in the common room playing a game with sabine and lunch will be here soon. Sabine is doing so well. At physio yesterday there is a 3 year old boy having treatment and the therapists have been trying to make him walk with his walking frame (its such a tiny frame) he cried and screamed, Sabine went over to him and chatted for a few minutes then handed him the frame and said 'here take it' and he did! The therapists were so pleased even though Sabine didn't know why it was so hard. This isn't an easy environment to be in for anyone and Sabine is really taking it in her stride.
Tomorrow there isn't any physiotherapy so we have arranged to go to The Taj Mahal, Sabine is so excited because she has been learning all about it at school.

Arrived in 1 piece

After a long flight we arrived back at Nutech Mediworld. Sabine was such a great help, even though she was tired as were we. There was a bit of confusion with our room and we were on different floors for the first night, but the next day this was rectified and we now have adjoining rooms with mum. Nora is my carer and she arrived at 9.30am with a beautiful rose for me. She has very good English which is a bonus because I have no Hindi! I went down to physio at 11am and Shivani did an assessment. Some muscle groups have stayed the same, my right leg is a bit stronger and my right hand is slightly weaker. In the afternoon I went back to physio to do my walking which hasn't changed over the last 3 months which in reality is a good thing but it would be good if I'd had some improvements. I had a fall about 2 months ago and my confidence has taken a battering so I haven't been doing alot of walking but have been going to the pool and walking to try and get my confidence back. So shivani will take it slowly with me, just short distances to begin with (20 steps) I had two injections on my first morning in each arm then in the evening I had an injection into my vein and then at the base of my neck on each side. Because I'm here for 1 month they dont waste any time getting into it. I spoke to Dr Ashish last night and shared my concerns and basically that I just don't get the whole thing. I have an exercise bike at home its a Motormed Bike that i sit in my chair and pedal it has a motor which can increase the intensity like you are going up hill. Before my second treatment I would pedal on levels 2 and 3 for 40 minutes, now I can pedal on levels 4 and 5 for 45 minutes which is actually quite a jump as I've never cycled on those levels. I explained this to Dr Ashish and he was pleased but I just don't understand why it doesn't relate to walking. He explained to me that the cells only live between 10 - 12 days if they haven't attached to a muscle to grow, the ones that have attached to the deteriorated muscle continue to grow, but when I've returned home if a new muscle not previously affected by the MD starts to weaken there are no cells floating around to attach to it and stop the break down. Which in reality means that I need an injection each day as a preventative measure, but that's just not going to happen in Australia. So where does that leave me and future treatments.....ummm....I don't know yet, I haven't processed the reality of this I only have enough energy to focus on this treatment, on today, tomorrow hasn't begun yet.
Sabine has settled in really well. when I'm at physio she helps the other therapists with the children having treatment or the siblings who are here and bored! She throws them a ball to catch and is enjoying having this role as helper. In the afternoon she pops down to the nurses station for a little while, helping them and enjoying there company. They all love her and give her lots of hugs and pinch her cheeks. For those who know Sabine know shes a very independent child and knows her own mind...spirited! I love her determination and I know she will make an awesome adult with great life skills, but she is struggling a bit with other people helping me, shes very protective, so its great that the staff here have embraced her desire to help and given her a 'special' role. Don't children have a way of holding a mirror up and reflecting you. When I was a child, about 3 years old, we had no gate on the fence separating the front and back yards, so if I wanted to I could go out the back door through the gate and into the front yard, I never went through but I had the door to freedom if I wanted. Dad finally put a gate up and the next day mum watched me from the kitchen window drag a bin over to the fence, climb up and drop over the other side! When I was give the choice for freedom I didn't take it but as soon as a barrier was put in my way, pffft...theres no way I'd have that! Its that stubborn determination that has kept me going in life and I see it in Sabine, my poor parents ha ha ha!!!!
Back to physio today and this afternoon I had a ride in an ambulance to have tests done ECG and a scan just to make sure all was well with my heart and yes I have one and its healthy. Its always such a drama transferring me in and out of cars and on examination tables, but no body dropped me so that's a good thing :-)
Thanks to those who send me encouraging emails....your words help so much.
2 days down....26 to go (not that anyone is counting ;-)

Tinned spaghetti, soft toilet paper and Hanna Montanna!!

I think we have the staples all packed. We fly out tomorrow afternoon for yet another round of stem cells. This time I'm taking my daughter Sabine and Mum and will be hiring a carer in Delhi, her name is Nora and we've spoken over the phone a few times, so hopefully it goes smoothly. We are staying 4 weeks.
For the first time I'm actually stuck for words, I've retreated into my emotional cave in anticipation for what is install before me. Think my spirit is tired before I've even begun this round.
Theres a song by a Nickelback called 'If today was your last day' I really like the words...'whats worth the price is always worth the fight'....
I'll keep you updated as I go. Thank you to those who have continued to send positive emails, text messages and phone calls over the last 3 months since my last trip, I know life gets busy for everyone and your thoughts are appreciated.

Ride with Cameron Meyer - World Cycling Champion - Fundraiser

RIDE WITH CAMERON MEYER

WORLD CYCLING CHAMPION

The Perth Integrated Health Clinic-Cycling Club is proud to be associated with Cameron Meyer, current World Cycling Champion as part of his clinical team assisting him in his preparations for the world title in 2010.

Cameron who is also on the professional circuit with Team Garmin Slipstream, one of the premier cycling teams in the world has kindly consented to be the lead rider for PIHC special Ride with Cameron Meyer and Help Claire Anderson Project.

Come and join us for a social ride with Cameron Meyer. Details are as follows:

Date: 19 September 2009, Saturday.

Time: Assemble time: 100 pm meet and greet with ride time at 130pm. Completion time estimated at: 400pm

Location: Point Walter Car Park (specifics will be emailed to those attending)

Distance: social ride for approximately 45 km primarily along the Great Perth Bike Ride Route.

Categories: Cameron has kindly consented to ride with everyone and we are dividing people into 3 categories to best suit their riding speeds:

Category A: 30 km per hour or more

Category B: 25 to 29 km per hour

Category C: less than 24 hours per hour

Category C will take off first with Cameron, followed by Category B and then Category A. Cameron will ride with each Category in this non race social ride.

We are limiting this ride to a maximum of 80 riders on a first sign up basis. This email cannot be on transmitted and only those invited via email can sign up.

Raise Funds for Claire Anderson

This social ride also has a purpose and that is to assist Claire Anderson who suffers from Muscular Dystrophy achieve her dream of gaining greater muscular function and control through stem cell therapy in India.

PIHC thanks Cameron Meyer for his continued generosity in assisting us in this special fund raising project for Claire Anderson.

Claire is a patient of Ian Wee, Director PIHC and she is also a fellow parent with both their daughters studying at the Perth Montessori School.

Ian hopes that his fellow cyclists and friends will help PIHC raise funds for Claire to fulfil her desire for greater function and independence.

Please read about Claire and her need for your assistance with the attached PDF documents in this email.

All riders who are to participate in this social ride event – entitled Ride with Cameron Meyer and Help Claire Anderson Project– will be asked to donate a minimal amount of $10 either in cash on the day or via EFTPOS.

PIHC staff will be on hand from 1200 noon to collect your donations. This time will also be an opportunity for everyone to meet both Cameron and Claire.

Please confirm your participation by emailing to: Ian Wee Director PIHC at: ianwee@pihc.com.au by the 16 Sep 2009. Please leave your name, contact email, contact number and your ride category with Ian Wee via email only. Specific course details and waiver of liability will be sent by email to those who confirm attendance. Those who cannot attend but wish to still donate can do so by contacting us on 9240 5266 and contributing over the phone. Please mention: Project Cameron-Claire when calling. With thanks – Ian Wee PIHC Director.

Did someone say cheeks!!!

Well its official, I had my cheeks injected yesterday...which cheeks I hear you ask? In fact I've had both cheeks injected with the same solution, I wonder if that means when I'm up walking if people will know if I'm coming or going!! Cause most of the time in India we never quite sure who's coming or going. Having my face injected is certainly an experience, the nurse put some numbing gel on first but Dr Ashish was doing his rounds and it wore off so Gaye buzzed the nurse to put on more, it actually didn't help much. The face has so many nerves its really sensitive, it really made my toes curl! It felt like wasp stings. But its done now and lets see what changes occur over the next 6 weeks or so. Actually yesterday was full on with 2 in my face, 1 in my arm, each thigh injected and finally 1 large dose in my veins (which the 5 nurses standing around me at the time hate giving to me, I said to one nurse I bet you'll be glad to see me go, she said yes without hesitating!)
Monday I had my last procedure where Dr Ashish did a deep muscle injection, he goes in close to the spine and its amazing how I can feel the solution running along my spine and then into my right hip, then he injected the left side and i could feel the same sensation into my left hip, its like a cold pressure running along your spine and into the area where it settles.
Its hard to believe 5 weeks has come to an end, I fly out early Friday morning. Dad and Gaye have pulled through and feeling better. They are not the only ones here who have been sick, its common, touch wood I haven't been sick!!
I have an appointment with an orthopedic surgeon on the 26th August, hopefully I can have surgery soon after that and be ready to come back here in November.
Even though I'm looking forward to coming home there is always a sadness to leave the people I've bonded with, my heart has 2 homes. This time around there have been a lot of couples here and its been so lovely to experience there unconditional love for each other. I met a lady from the States who was in a car accident, she was hit by a drunk driver killing her sister and breaking her neck, she had been married 1 month. When the psychologist came to see her he said that she needed to give her husband the choice to leave. Can you imagine losing your sister, breaking your neck and then giving your husband the option to leave! But she did give him this option and he said no, they've been married 9 years. I could tell you more stories of love over coming tragedy or they met after the accident and I realised something, it doesn't matter what relationship you are in, if you have a disability or not...problems don't leave...people do.
The role that the carer plays here is vital to our treatment and not always easy for them. I found a poem by Elizabeth Kubler Ross which is for the patients who come here with hope in there hearts, the carers (my carers past and present) who cheer us on and for those at home who don't realise how important it is for us to hear from you, and for looking after my precious angel Sabine, I couldn't come all this way if I didn't know she was ok (thanks Mum and John...oh I believe I'm coming home to Sabine doing tap dancing lessons, I have floor boards at home and its never going to be the same again, thanks Michelle for buying her the shoes and Jess for taking her to lessons!!) Gaye and Dad are real troopers sticking this out for me, love you both, sorry I tried to kill you!! :-)

The most beautiful people we have known are those who have known defeat, known struggle, known loss and have found there way out of their depths. These persons have an appreciation, sensitivity and an understanding of life that fills them with compassion, gentleness and a deep loving concern. Beautiful people do not just happen. Elizabeth Kubler Ross 1926 - 2004

Gaye has gone to the markets to pick up some last minute things and Dad is out doing a coffee run.
Thank you again for continuing to support me and I look forward to seeing some of you on Wednesday night at my fundraiser, the plays are brilliant, it will be a great night.

Photos

Dr Su Deep giving me injections in my shoulders before tying me up for an hour. The t-shirt i'm wearing was a gift from a patient here.

I'm just tied up at the moment!!

Friends in our room

Lunch at Spaghettis :-)

At the other hospital having a 3 day procedure with Louis from Florida in our sexy attire!! I'm holding the port where Dr Ashish injects the stem cells.

Who's gonna walk Claire??

Its the question of the day, whos going to walk Claire? Last week after Gaye recovered from Delhi belly she was hit with a flu and sinus infection, took her a couple of days to revover with a fever and sweats. Then Dad came down with it, its taken him even longer to recover as he's had a high temperature and his blood pressure has been up. So its been a bit of a toss up as to which one of them has the strength or energy to stand me up. Gayes hurt her back so Dad does it but the poor guy was so weak, I was really worried about him. His temperature has finally broken today and he's feeling better but is still fatigued. Gaye went for a massage today which has helped her pain...OMG I'm killing them!!! It really has been hard for them, hopefully by the time we are ready to fly they will feel better.
When I go to physio one of the male physiotherapists helps me to stand so I can get on the bed, its a technique they use for spinal cord patients where they grab the back of there pants and lift them up, lets just say this took me by surprise!!!I had an image of bart simpson with his undies pulled up over the back of his head! So the next day I made it quite clear that this technique didn't work for me, the male physio laughed but followed my instructions. Physiotherapy is going quite well, I'm improving slightly, particularly my right leg which was always the more dominant. I almost slipped over walking at the beginning of the week as the floors are very shiny and slippery. Since then I've lost a bit of confidence and make Shivani hold my frame, when she does I feel more confident to take a bigger step, especially with my left foot, which I use to drag a bit, but now I take a more controlled step, not perfect but its a little better
Dr Geeta decided to inject my deltoids muscle to encourage growth. So on Tuesday Dr Sud Deep injected large doeses of cells then instructed that I have my arms in slings, the nurse put the sling around my neck and crossed my wrists at the front, but this didn't help because the aim was to push my arms up into my shoulders so the bones are sitting correctly which will take pressure off the deltoids muscles, nerves and tendons. In the end Dad and Gaye made a sling, Gaye held my arm in place and Dad banged from my elbow up to my shoulder, on both sides! I couldn't do anything for an hour. I'm meant to do this three times per day, but it pulls on my neck, so I figured out that if I lay flat on my back my arms will sit correctly in my shoulders. On Friday I had the same injections again into the deltoids muscles, so hopefully this will encourage growth over the next few months, and surgery too will relieve the pressure, but one at a time! I had another IV on Thursday and slept for a few hours as my body ached. Generally I have 2 injections in the morning where they inject a large amount into my vein and then 1 intra muscular injection, at night I just have 1 intra muscular. I haven't had any more in my face yet but I'm going to ask Dr Ashish on Monday to inject my cheeks before I leave, I have a procedure on Monday but I don't know what its is! Thats just the surprise of India, you just never know what procedure your going to have, when dinner is going to come, when is the taxi coming and does he know where he's going and will the lift be working! Talking of lifts working, Dad and I got stuck the other day, we got in started to move and the power went off, you have no idea how dark and hot a life can be. I told Dad to pull open the doors and yell for help, which he did, nothing happened. We were stuck between floors so Dad had to yell up wards which he did a couple of more times before we heard the familiar flip flop sound of the nurse coming, she didn't know where the sound was coming from, so Dad yelled, down here..oooooh! She called the ward boy who ran up stairs and we could hear tinkering, the power came on, so we had light but still no movement. A few minutes later we moved and went to the basement as the doors opened I told Dad to get out and go up stairs to the reception area and wait there with Gaye, no point in both of us being in there. I waited a few more minutes then went back into the lift with the ward boy and to my delight we went to the correct floor. The whole ordeal was probably only 15 minutes but in the dark and heat it feels much longer. You've just got to laugh...what else can you do! I think its the friends that you make which helps your sanity as we are all feeling the same emotional highs and lows. Its Saturday night which means pizza night, I wasn't too keen at first but Jarrad said ..'they also sell cake'!! He's an Aussie boy with the cheekiest grin who's room I visit to harass him and his Dad frequently...so that changed everything for me, looks like pizza, cake and poker tonight!

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

The Faith is out of Claire's hands tour!

In typical Claire style I have to find a meaning or give a name to what I am doing. I have a friend called Hayden and a few months back we were discussing my treatment and my fundraiser and he said to me, 'you know Claire in this instance the faith is out of your hands'. For those who know and love me anything that is out of my hands....ummm...well just can't be. I'm the captain of this ship, I make the decisions for my life! But I thought long and hard about his words and to be honest he is totally right. I have been completely overwhelmed and humbled at the emotional and financial support I have been given to continue my treatment. There are so many people who are hoping and praying for this treatment to be successful that really the 'faith is out of my hands', I can rely on the positive words and faith of others to carry me through this next round. Thank you seems so superficial, I am so grateful and blessed to have this support. thank you! The next step is up to me and to step is what I crave for, one at a time!
I fly out on July 1st for 5 weeks returning on 8th August. Gaye is coming with me (she's my step mum and no not the wicked kind!) Then my Dad is flying over on the 19th July to join us for the remainder of my treatment. I'm feeling a little anxious as I know what to expect but excited thinking what this next round will bring me. What i've learnt so far is that stem cells are slow....so slow...almost painfully slow! What i hoped to achieve in 12 months in reality will probably take 2-3 years and thinking back Dr Geeta did say to me its a 2-3 year program.

Five weeks away from Sabine (my 7 year old daughter) is going to be tough. I'm so proud of her and her strength. She logically knows i need to do this but emotionally she is being challenged.
I know she is loved and safe while I'm away, my guilt is just something I need to put in a box with a tight lid on it while I'm in India.

It will be interesting to get feed back from Dr Geeta and Shiviani (my physiotherapist in India) on my progress, its been 8 months since I was there and I'm sure Karlee (my physio here in Perth) and I are on the right track......talk to you all soon :-)