Monday 12 March 2012

12 Mar 12

Hello everyone,

Supatra continues to do well although still more tired than she was a little over a month ago.  A few days after my last post I decided that we should try to edge Supatra's treatment closer to her target and increased the AS-10 by 2ml to 192ml.  She was doing really well at 190ml and her rash had gone away for a number of days so thought that it would be OK BUT after increasing it her rash came back again..arrgh!  The rash lasted almost all last week but started to recede by Friday and as of yesterday it was almost all gone.  The crappy thing is that the rash spots as they dissappear leave these ugly dark spots that look like bruises and they can take a couple of weeks to fad away.  Her arms and legs right now look terrible.  I feel so bad that she has to go through all this and it hurts me knowing that she wants so much to be out playing like regular kids and to be at school full time.  Punny still gets her to the school for 3-4 hours once or twice a week but it is not the same.  I also think that she and her best friend are starting to drift apart as they see less and less of each other.  We also continue to fear for her mental capability as her memory continues to be affected and she becomes more and more dependent on as for almost everything.  Its almost as if her brain is in reverse mode.  Sometimes she is sharp as a whip but more times than not she does not remember things she would otherwise easily have done.  Having to provide 24/7 care to Supatra is also starting to wear me and Punny down as one of us needs to be with her at all times and sleep with her.  The constant getting up and changing Supatra, cleaning the bed, emptying the portatoilet next to her bed really gnaws at your energy and both me and Punny are starting to feel it.  Even so I am trying to get back into the gym in the mornings but it is hard to work up the energy. 

We now have a date for Supatra's next MRI scan which is slated for the 22 March. Please put in an extra prayer for her on that day.  I really hope to see some tumour shrinkage but part of me thinks that it will be the same as before as her blood analysis does not indicate any tumour breakdown.  We can only hope and pray, I guess.  At least Supatra is managing to stay at her dose level and who knows, maybe it will take an extra few months at this level to start slowly wearing down the tumour.  We continue with the other alternative medicines as well.  Additionally, we read an online book called "How to Live a Long and Healthy Life...The facts you need to safeguard the health of your family" By Kevin Wright and can be downloaded for free at www.BobbysHealthyShop.co.uk.  It basically covers a whole bunch of things such as the water we drink, especially bottled water, chemicals in processed food, dairy products and such.  Some of this stuff we already knew and or had heard about before but we lost sight of and the information in this book has re-focused our energy on trying to mitigate modern life's impact on Supatra's cancer.  We not longer store her leftover food in plastic storage devices, no longer let her drink from plastic bottled water, we are trying to cut out as much processed food as possible - very hard to do - and in some cases where we can not make something fresh or find an alternative fresh source we try to choose the least harmful product out there.  We are replacing all sugars with honey and other natural non-refined sweeteners and absolutely under no circumstances are we giving her any food that contains artificial sweeteners.  Punny has been busy trying out our new bread maker and we are trying to cook fresh meals everyday.  Of course shifting once habits to a healthier old style of eating is very difficult when one is so used to modern conveniences like fast food, easily prepared processed food and using the microwave to heat things up.  We hope this new invigorated approach to a healthier way of living and eating will also have a positive affect in Supatra's cancer fight.  If you can I would read this manual as there are some interesting facts and the author does source and provide links to all his research - an interesting read which can be consumed in one evening!

Last, a big thank you to all the friends who ran in the Cambridge half marathon this last Sunday.  It was beautiful weather for it and we came out to cheer them on as well.  Everyone did a superb job and I think most of them came in at around the 2 hour mark! So, well done and thank you for enduring the pain on behalf of Supatra!!

A reminder as well that the committee will be hosting an Auction night at the Lion and Lamb Pub in Milton (see events page) and there will be some fabulous items to be auctioned off including celebrity items and sports memorabilia!  So please come out to this wonderful little village pub - that by the way has some delicious pub food and great social atmosphere - and support the fundriasing efforts.

Till next time,

Best wishes to all,

Jorg

No comments:

Post a Comment