June 2012
Hi Hopeful,
Your husbands love made you who you are today. All of the experiences you shared together- falling in love, creating another life together, supporting him through his illness, coping with his death- they have all changed you. You'll never be the same person again that you were before you met him. The greatest love a person can ever feel, that between a mother and child, you have because of the love that you and him shared together. There will always be a part of you, your personality, your soul, that is the way it is because he was in your life. He may be gone now, but the impact that his love had on your life will always be with you. He will always be a part of you, a part of your son, and a part of everyone else who loved him.
I'm so sorry to hear about your husband...my grandfather recently passed away from GBM. My Nan is completely heartbroken. :(
Hang in there
xo
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May 2012
So after days of being mostly non responsive and very agitated, pop woke up this morning and very clearly told the nurse that he wanted breakfast (he has been NBM since surgery.), told them he wanted his tablets(things such as arthritis meds) and asked when he could do his exercises! After speach pathologist assessed his swallowing, he was able to eat soft foods like custard and pureed vegies. Words a little slurred, but he understood everything we were saying and respond appropriately, so we were able to have a propper conversation. He made us give him his glasses to put on and insisted that we write down a list of everyones phone numbers for him! Then he put the tv on and watched the history channel (which he loves) for a while. Hes being much more cooperative, once we explained that he had a slight chest infection and needed the oxygen he was more than happy to put it on. He even asked us a couple of times if it was still on properly...a massive change from yesterday where he kept ripping it off!! Black eye has reduces massively and now he can open it fully. Still no movement in left side, but he told me that he could feel it. But i suppose not being able to move half your body wouldnt be nearly as bad as not being able to talk or communicate.
We're ecstatic!! We all cried with joy when we saw him this morning. Watching him after surgery was a nightmare, and he seemed to be making very slow progress. We were all stressed, scared, exhausted and heartbroken. Just when I began to wonder how much more I could take and how on earth I was going to stay this strong indefinitely...he suddenly improves by leaps and bounds :)
I'm learning that sometimes the little things mean so much more than the big picture, and I dont think there's anyone on earth happier than us right now ๐
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May 2012
So after days of being mostly non responsive and very agitated, pop woke up this morning and very clearly told the nurse that he wanted breakfast (he has been NBM since surgery.), told them he wanted his tablets(things such as arthritis meds) and asked when he could do his exercises! After speach pathologist assessed his swallowing, he was able to eat soft foods like custard and pureed vegies. Words a little slurred, but he understood everything we were saying and respond appropriately, so we were able to have a propper conversation. He made us give him his glasses to put on and insisted that we write down a list of everyones phone numbers for him! Then he put the tv on and watched the history channel (which he loves) for a while. Hes being much more cooperative, once we explained that he had a slight chest infection and needed the oxygen he was more than happy to put it on. He even asked us a couple of times if it was still on properly...a massive change from yesterday where he kept ripping it off!! Black eye has reduces massively and now he can open it fully. Still no movement in left side, but he told me that he could feel it. But i suppose looking at the big picture not being able to move half your body wouldnt be nearly as bad as not being able to talk or communicate.
We're ecstatic!! We all cried with joy when we saw him this morning. Watching him after surgery was a nightmare, and he seemed to be making very slow progress. We were all stressed, scared, exhausted and heartbroken. Just when I began to wonder how much more I could take and how on earth I was going to stay this strong indefinitely...he suddenly improves by leaps and bounds :)
I'm learning that sometimes the little things mean so much more than the big picture, and I dont think there's anyone on earth happier than us right now ๐
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May 2012
Hi Josh, noticed on your blog that you are from the same area as me. (I live in Windsor). I hope you dont mind that I added you on FB. Your blog is very inspiring and well written, you express your emotions so clearly. I find it helps me to write about my feelings and experiences too ๐ I only skimmed through but I look forward to sitting down and reading the whole thing...when I eventually get the time!! Hope all is well xo
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May 2012
http://clearstudy.org.au/
The above link is to a research study run by Cancer Council NSW that looks into the lifestyle and environmental factors contributing to cancer.
The study involves a questionaire that can be completed either online or by a mail pack. They are also requesting blood samples (optional).
Participants must be over 18, reside in NSW and have been diagnosed with cancer for the first time in 18 months. They are also asking for partners to participate. I know that it will not be applicable to all of you, but if you are eligible I urge you to participate!! They need thousands of people to take part in order to get accurate results. Think of it as your chance to fight back against this horrible disease.
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May 2012
http://clearstudy.org.au/
Participation is only available for people over 18, living in NSW who have been diagnosed with cancer for the first time in the past 18 months.
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May 2012
There actually is a research study going on at the moment that involves a questionaire on lifestyle/environmental factors and an optional blood test. There was a pamphlet for it in an information pack a friend at the cancer council sent us (it was very helpful with lots of information!)
I'm not sure how it is conducted, but I will find it and post the details. Sounds like there are many potential participants!
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May 2012
update on my grandfather-
He has said a few words and responding to commands such as 'stick your tongue out'. My uncle was asking him questions and pop was able to answer by saying 'yes' or trying to shake his head for no. Was able to gently squeeze doctors hand on paralyzed side, but still no sensation.
Hes still very distressed, but no longer pulling equipment off so no longer needs to be restrained or held down (thank god!!!) still needs to be constantly watched just in case, hospital organised a special nurse to sit near him all night because they could see we were all exhausted. After a very rough night last night he slept about 4 hours today before waking, and tonight they were able to get him to sleep around midnight. I saw him asleep, he looks so peaceful. we've rolled him onto his side and he seems much more comfortable.
Doctors say things are all normal and no worse than expected, that its a good thing hes fighting back because it shows he has strength aswell as fine motor skills. We're just trying to wait it out. Its so exhausting because he'll have good periods then slip back again... at least each good period is slightly better than the last.
My nan and I spoke to him on the phone tonight, all he managed to say was a weak hello but it was so great just to hear his voice...it was the first time either of us had smiled properly all week ๐ Relatives at the hospital told us later that he definitely knew it was us ๐ he has said a couple of words before, but they were much weaker and quite difficult to understand. Its a small win, but finally we have SOMETHING positive to hang on to!!!
Trying not to get too excited because he's up and down and it is very possible he'll slip back again. But tonight made me realise that even though we may not be going directly forward, we're still heading in that general direction.
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