On Monday I was finally able to reduce my steroids to one tablet a day - and I am thrilled to announce that yesterday my appetite dropped significantly - whoo hoo - I am no longer obsessed with food!!!! It is a great feeling - and now I'm just looking forward to losing some of this weight!
I was put onto different antibiotics yesterday, as I still cannot seem to shake this chest infection - so hopefully it will clear up in the next couple of days. I am waiting for an appointment for a CT scan, just so they can check what is happening in my chest. I am still feeling really well, I have a couple of issues with my sight (judging if the ground is flat or not and things like that), and am a little shaky in my hands - I am feeling REALLY well (and happy) other than that! Oh, and did I mention I have a brown forehead!! Someone even asked if I had had my teeth whitened my face is so brown :-)!
Marc and Millie are both well - Millie is back at daycare a couple of days a week which is great for her. Marc said that she was so excited to be back there that she was trying to throw herself out of the car!
This weekend we are going to pick out some Cacti for our landscaping project (Marc will post some photos on the weekend) - and then we will spend Saturday afternoon at Norman and Sue's having a repeat of last Saturday (carn the Pies)!
Lou
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We (Marc, Lou and Millie) have created a blog to keep in touch with all of our family and friends to pass on our news whilst we start the next big battle ahead of us.
Thursday, September 30, 2010
Monday, September 27, 2010
Chemo, Grand Final and a High Tea
I started my chemo again last Wednesday, and although I was a little tired towards the end of the week, I am still feeling really well. I had some severe leg pain on Saturday and Sunday morning from one of the drugs which was horrible, however a "quick release" morphine tablet soon sorted that out!
On Saturday we spent the day at Norman and Sue's with Armin and Penny watching the AFL Grand Final - it was a great day (although I was disappointed at the way the match ended), although it gives an excuse to do it all again at Norman and Sue's next weekend!
On Sunday, we were invited to the SPCA (Society of Prevention of Cruelty to Animals) High Tea by Rob and Carole from Pets in The City (where Millie goes to doggie daycare) at the Stamford Plaza - and we had a fantastic afternoon. It was lovely to get dressed up, put on some high shoes, wear my black glittery hat, and enjoy delicious food and great company. We got to spend some time with Jules who owns Rocco - Millie's best friend who is just the most adorable French Bulldog you have ever seen - so that was wonderful too.
Lou
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On Saturday we spent the day at Norman and Sue's with Armin and Penny watching the AFL Grand Final - it was a great day (although I was disappointed at the way the match ended), although it gives an excuse to do it all again at Norman and Sue's next weekend!
On Sunday, we were invited to the SPCA (Society of Prevention of Cruelty to Animals) High Tea by Rob and Carole from Pets in The City (where Millie goes to doggie daycare) at the Stamford Plaza - and we had a fantastic afternoon. It was lovely to get dressed up, put on some high shoes, wear my black glittery hat, and enjoy delicious food and great company. We got to spend some time with Jules who owns Rocco - Millie's best friend who is just the most adorable French Bulldog you have ever seen - so that was wonderful too.
Lou
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Tuesday, September 21, 2010
Full steam ahead
Today Marc and I had a really good meeting with Dr McCrystal - everything is full steam ahead to start chemo again tomorrow which is really positive news. I will have it once every three weeks, and the side effects are expected to be quite minimal which is great news too. I have had one session of it before, however I think that the brain tumours were causing more of the side effects than the chemo itself - so it will be interesting to see how I go this week. I will have a CT scan in the next 3-4 weeks just to make sure that everything is behaving itself, and then I might be cleared to fly in about 6 weeks time.......Melbourne and/or Fiji - here we come! I have picked up a 'slight' chest infection, so we are on antibiotics just to make sure that doesn't hinder anything.
I donned my 'j-lo' wig today, and had a great lunch with Ryan, Ruth, Ness and Armin - followed by a sweet muffin. Today my steroids dropped from 3-2 and touch wood I have only had one 'wig-out' (that was for you Gina) at Marc - so that is progress too.
Lou
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Monday, September 20, 2010
The "Buzz Cut", Yum Cha and a $5 Cupcake
On Saturday, Marc and I had our appointment at the wig shop. Jenna was absolutely wonderful, and did a fantastic job "buzzing" my hair off. It was actually such a relief as my hair was feeling really "toxic" from the radiation, so it was great just to get rid of it. Marc was extremely patient whilst we finalised the wigs - while I was imagining what they will look like when my "balloon" face is gone!
On Sunday we were supposed to have lunch with Norman and Sue and the kids, however poor Hannah had come down with a head cold (which I have to stay away from), so Marc and I went to Yum Cha instead....and it was delicious!
On the way back to the car - we found a Cup Cake shop, that just sells Cup Cakes - so of course we had to pick one of those up for afternoon tea!
It was a great weekend!
Tomorrow I have my appointment with Dr McCrystal, so we will find out when my chemo will start again, followed by lunch with Ryan, Ruth, Ness (my friends from the office next door) and Armin.
Love Lou
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Friday, September 17, 2010
All finished
Yesterday I had my last treatment of brain radiation. We took some "happy snaps" with the lovely staff, the amazing machine and my sci-fi mask - close your eyes for the third photo Nana!
Today my hair is officially falling out - in absolute handfuls. I tied it up in a bun quite precariously, and went and had a delicious brunch with Sue and Penny - can you tell that a lot of my life is still revolving around food??? Sue and I then went for a quick shop - and I have spent the afternoon at home which has been lovely.
Tomorrow morning Marc will buzz my hair off, and then we will go to the wig shop to get one fitted properly. Sunday we are having lunch with Norman, Sue, Hannah and Callum which will be great.
I'm still feeling generally well, and thankfully my "roid rage" has calmed down significantly today which has been great relief.
Lou
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Wednesday, September 15, 2010
1 "zap" to go and starting to struggle!
I cannot believe that I have nearly finished the Whole Brain Radiation treatment. Armin took me to the hospital today, and had a great time discussing the treatment with all of the lovely staff (they are an amazing team) - apparently she couldn't believe how "sci-fi" the whole process was, what with the laser beams that they use for alignment etc. The mask was tighter than ever, however this is normal due to the steroid swelling in my face (Marc is convinced that my Mum had an affair with Bert Newton)!
The last few days have gone well. I had a good appointment with Dr Jose on Monday, and everything is going according to plan. I was able to reduce my steroids from 16mg to 12mg from yesterday, which I will maintain for a further 7 days before slightly reducing again (it will take nearly a month to wean me off of them totally). Yesterday and today have been quite difficult adjusting to the reduction, and my "roid rage" has been quite unbearable for poor Marc! It is really difficult as they totally change your personality - and you lose all of your 'common sense'! Apart from that I just feel like I have severe sunburn on the top of my head, and am a little vague and tired - all in all - cannot complain at all (although Marc surely can!!!) ! No hair loss yet either which has been nice.
Tomorrow I will have my last "zap", and then the treatment will continue to radiate my brain for a further 6-8 weeks. It is around about that time that I will have my next MRI to check in the progress. Still no driving, however I can be left alone for "short periods" which is great.
I have an appointment with Dr McCrystal (Oncologist) next Tuesday, and then we will we get back onto the chemo for the lung mets - need to get onto those little suckers too!
Lou
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The last few days have gone well. I had a good appointment with Dr Jose on Monday, and everything is going according to plan. I was able to reduce my steroids from 16mg to 12mg from yesterday, which I will maintain for a further 7 days before slightly reducing again (it will take nearly a month to wean me off of them totally). Yesterday and today have been quite difficult adjusting to the reduction, and my "roid rage" has been quite unbearable for poor Marc! It is really difficult as they totally change your personality - and you lose all of your 'common sense'! Apart from that I just feel like I have severe sunburn on the top of my head, and am a little vague and tired - all in all - cannot complain at all (although Marc surely can!!!) ! No hair loss yet either which has been nice.
Tomorrow I will have my last "zap", and then the treatment will continue to radiate my brain for a further 6-8 weeks. It is around about that time that I will have my next MRI to check in the progress. Still no driving, however I can be left alone for "short periods" which is great.
I have an appointment with Dr McCrystal (Oncologist) next Tuesday, and then we will we get back onto the chemo for the lung mets - need to get onto those little suckers too!
Lou
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Thursday, September 9, 2010
Brunch, Wig Shopping and only 5 "Zaps" to go
This morning Mumsie and I met with Sue for a lovely brunch at The Hardware Cafe which was delicious - great company and scrumptious food - not to mention the coffee!!

After that, we went to the Wig Shop - to try and find me the perfect wig before my hair falls out early/mid next week. Wig shops are horrendous places......I am sure that most of the wigs are designed to be worn by people aged 50+ that look something like Deidre from Coronation Street.......not really meant for someone like me with quite thin/flat hair. Anyway, luckily the girls were lovely and we had a laugh or too.
After that, we went to the Wig Shop - to try and find me the perfect wig before my hair falls out early/mid next week. Wig shops are horrendous places......I am sure that most of the wigs are designed to be worn by people aged 50+ that look something like Deidre from Coronation Street.......not really meant for someone like me with quite thin/flat hair. Anyway, luckily the girls were lovely and we had a laugh or too.
Not sure if this is "the" wig yet - I will have to drag poor Marc there early next week to get his opinion on the new do!
After that it was my 5th session of radiation - half way through!!! Still going really well - no side effects - and still not feeling a thing!
Then Penny popped over for some cheese and Pinot - we had a great time chatting. And then Mumsie made her delicious pasta for dinner - and we are now enjoying our last night together before she flys home tomorrow. I will be very sad to see her go, as we have had such a great time over the last 10 days - and really couldn't have done everything without her help - especially putting up with my manic moods from the steroids and multitudes of "to-do" lists and tasks to constantly check off - thanks for your patience Mumsie!
Marc is currently on his way home, so it will be lovely to see him tonight - and to spend a lovely relaxing weekend together - I have missed him a lot.
Lou
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