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micgrace

mswijiknyc's picture
mswijiknyc
Posts: 421
Joined: Oct 2010

Wondering how you and your lady love and the family are doing. It's Memorial Day weekend here in the States - lots of time for thinking. For me anyway :)

micgrace
Posts: 131
Joined: May 2011

She is getting her cognitive functioning back. But the movement problems remain. I have been battling what we call centrelink (social security)for a carers pension and trying to organise my research around her while looking after kids and home and her affairs. All the time the inlaws think they know what is best without providing any assistance.

She is scheduled for her first appointment with the oncologist. They are optimistic since the bulk of the tumor was removed albeit with the loss of some functionality.

mswijiknyc's picture
mswijiknyc
Posts: 421
Joined: Oct 2010

I'm focusing on the good vibes the onco's have. I dealt with the same problems getting Patrick his disability and trying to keep the house running.

Sorry to hear about the in-laws giving you such fits. It must be really nice to sit in that lofty pedestal and direct the commoners. I wouldn't know - I was always in the middle of the fight not looking in from the outside.

Take care of yourself and find the sunshine :)

Loves,
April

micgrace
Posts: 131
Joined: May 2011

Hi The in-laws have gone back home. Grace is gradually recovering from the resection and shunt operations and should soon be ready for a mask to be made in preparation for radiation along with added chemo. The physios have been working her to develop some additional functionality but its very slow progress however she was able to stand almost unassisted for the first time since admission. However, I suspect Grace is beginning to feel a bit depressed.

I have problems obtaining a carers pension thanks to some doc that scratched out what he wrote and forgot to initial it so I have to apply all over again. It would have been very simple to send it back to get it fixed up, but they don't work like that. As if I need that added stress as I am at my limit now.

mswijiknyc's picture
mswijiknyc
Posts: 421
Joined: Oct 2010

If it can go wrong it will. Had that problem a couple times with Patrick's disability - I know I sent it in, the doc's patient coordinator knows she sent it in, it still managed to get "lost." Keep on it - chances are good that they will give you the back pay (woo hoo)

Depression will set it, I would mention it to her doctors and keep on them until they do something about it. Don't let them pass it off as after affects of surgery or some other line of B.S.

Standing? YAAAAAYY!!!!! Little steps hun little steps :) How are your kids handling it? Glad to hear the in-laws are gone. They didn't sound at all helpful.

Keep me/us posted - I often wonder about the guy and his lady from Down Under :)

Loves and Hugs,
April

micgrace
Posts: 131
Joined: May 2011

Hi Grace has managed to recite that thing we take for granted, the alphabet without prompting. Most think so what, but she couldn't get past "A" yesterday. She can now also count without prompting. Still awaiting news if movement on the RHS becomes possible.

The team doesn't seem keen on administering radiation and chemo at the same time. I don't quite agree as I am of the opinion one will get one good shot at it and then the cancer will mutate to harder to treat cell type. if the cancer is weaken either by radiation or chemo a hit at the same time with the opposite may just eliminate it in its entirety. The team is still arguing about that approach with each "side" pushing its viewpoint with my input as well being to unite both approaches. I do have the distinct advantage of being able to access current online journal articles.

mswijiknyc's picture
mswijiknyc
Posts: 421
Joined: Oct 2010

It is odd that they won't do chemo and rads at the same time. Patrick's docs were pushing to do both at the same time as a 1-2 knockout punch. Maybe because of the differences in how they do things there versus here? It is a great thing you have that access - it may help to decide how things get done. Being able to back up your argument in ways the docs can understand never hurts.

EXCELLENT!! She is on the mend! I'm so happy to hear that! I'll continue to keep you, her, and the family in my happy thoughts :)

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