Over the past week we have put up the levels of Dex Meth, the drug that reduces fluid hoping that this will ease some symptoms. While it has done this with regards to the physical side of having too much pressure - reduced function of her right side and ability to speak, one of the side effects is that it accentuates emotions and this has caused my partner to have hi levels of anxiety and reciprocally me and our son as well!
Now we are reducing it I hope that we can get back to a level where the benefits outweigh the side effects and the side effects disappear and she can cope a bit more. From this wierd angle I feel like the evil Dr Strangelove. She is also sleeping a lot and needing to eat more often. I am hoping these things will pass and she can have some decent time between the chemo weeks. Something it seems that she has not been able to grasp for very long between the last two sessions.
Next week's a week off work for me. I am looking forward to that with 2000 percent of positivity that it will be a good week!
Tuesday, August 31, 2010
Activities for Visits
Here are some suggestions for visiting provided by my partners speech therapist
Sometimes talking can be very tiring. You might find it useful to do activities which do not rely heavily on talking when people come to visit.
Some ideas might be:
• Going for a walk
• Cooking together
• Spending time in the garden
• Listening to music
• Going for a drive somewhere
Communication Activities
When having conversations it might be useful to base them around some visual cues to take the pressure off the words, some examples might be:
• Looking through some photos together
• Watching small amounts of TV and pausing for breaks
• Looking through recipes and discussing them
• Reading aloud newspaper articles etc that would be of interest to Carol
• Bringing along items related to what you have been doing eg. photos of a recent trip
Sometimes talking can be very tiring. You might find it useful to do activities which do not rely heavily on talking when people come to visit.
Some ideas might be:
• Going for a walk
• Cooking together
• Spending time in the garden
• Listening to music
• Going for a drive somewhere
Communication Activities
When having conversations it might be useful to base them around some visual cues to take the pressure off the words, some examples might be:
• Looking through some photos together
• Watching small amounts of TV and pausing for breaks
• Looking through recipes and discussing them
• Reading aloud newspaper articles etc that would be of interest to Carol
• Bringing along items related to what you have been doing eg. photos of a recent trip
Thursday, August 19, 2010
Good News
Hi Ho for the weekend and an RDO on Monday! A nice long break at last one would think. Not bloody likely. Last Saturday my partner again seemed like she was going down the slippery slide after reducing the Dex Meth.
On Sunday her arm was paralysed and she was having difficulty walking. It was very depressing. We upped the Dex Meth and she managed to gain some of her abilities but it was only window dressing. I was in contact with the oncologist on-call at the hospital and they agreed with upping doses.
On Monday we made inroads to get her into hospital for an aspiration of her Ommaya Shunt. It took all day. We sailed easily through the CAT scan. We thought seeing as they had gone through the procedure previously it would be all down wind this time. It was all hospital mellodramas and a 20 minute wait turned into an hour and a half of waiting with 5 phones calls to get the appropriate people. We were left totally stressed out by the end of it all and very disheartened. We felt very much at the end of it all and that the cards were getting higher and higher and being stacked against us.
On Tuesday we felt empty and weren't holding up much hope. It was much like Tony Abbott had got into power with a landslide majority. There did not seem to be much change to my partners abilities and I rang that I would be late to work because she couldn't make her own breakfast. I think this would be one of the lowest points of my existance. That evening we talked about end of life stuff
with my son and a close friend that has been a rock for us all.
On Wednesday I slept in for an hour and rose late at 6:30 am. A ray of sun was filling the house but I was oblivious to it. We lay in bed staring at the ceiling and talked about how it should end. My son stayed home because he was sick with a cold again. It was all lyrics from a Leonard Cohen song.
We had a meeting at home with the Palliative Care team. I got my partner some breakfast again and got ready for the meeting.
After three hours talk things had felt like they had suddenly come full circle. We had some support to get some things happening.
In the afternoon we had some good news. The Cat Scan that had been taken on Monday showed that the node of cancer left after the operation had not increased in size since the previous CAT scan done on the 13th of July.
On Sunday her arm was paralysed and she was having difficulty walking. It was very depressing. We upped the Dex Meth and she managed to gain some of her abilities but it was only window dressing. I was in contact with the oncologist on-call at the hospital and they agreed with upping doses.
On Monday we made inroads to get her into hospital for an aspiration of her Ommaya Shunt. It took all day. We sailed easily through the CAT scan. We thought seeing as they had gone through the procedure previously it would be all down wind this time. It was all hospital mellodramas and a 20 minute wait turned into an hour and a half of waiting with 5 phones calls to get the appropriate people. We were left totally stressed out by the end of it all and very disheartened. We felt very much at the end of it all and that the cards were getting higher and higher and being stacked against us.
On Tuesday we felt empty and weren't holding up much hope. It was much like Tony Abbott had got into power with a landslide majority. There did not seem to be much change to my partners abilities and I rang that I would be late to work because she couldn't make her own breakfast. I think this would be one of the lowest points of my existance. That evening we talked about end of life stuff
with my son and a close friend that has been a rock for us all.
On Wednesday I slept in for an hour and rose late at 6:30 am. A ray of sun was filling the house but I was oblivious to it. We lay in bed staring at the ceiling and talked about how it should end. My son stayed home because he was sick with a cold again. It was all lyrics from a Leonard Cohen song.
We had a meeting at home with the Palliative Care team. I got my partner some breakfast again and got ready for the meeting.
After three hours talk things had felt like they had suddenly come full circle. We had some support to get some things happening.
In the afternoon we had some good news. The Cat Scan that had been taken on Monday showed that the node of cancer left after the operation had not increased in size since the previous CAT scan done on the 13th of July.
Friday, August 6, 2010
1st Week Post Chemo
Last Sunday we went to see the movie South Solitary together. We both enjoyed it. It was reminiscent of some areas of Tassie.
My partner has been slowly recovering from her operation. Earlier in the week she was starting to suffer from increased difficulty with her speech and I was all ready to go and battle the neuro-surgical unit to get something done. Wehad not had word of how to manage the aspiration of any fluid that may have built up since then and it seemed like that was happening and this was becoming more and more stressful. However on Tuesday things were put right during a Haematology Clinic Appointment where the neuros took off 70 mls of fluid. It was a lot and they send some off to pathology which we have yet to get the results from.
She has had to go back on the Dex Meth. Each time she has gone off it something crazy happens so I am hoping staying on a small dose for longer may do the trick.
She seemed a lot more stable last night. Her writing and reading does not seem to have improved to the level it was before the operation and she seems to be having a harder time making a phone calls. It is getting more difficult to keep her spirits up and even though you don't want to it gets harder to maintain positivity in conversation. A good discovery has been that food and sweet things seem to help her speech and thinking and get rid of the depression she may sunk into at times duringthe day. I am looking forward to a week off from the fourth of September.
On Wednesday I shaved her hair on the side of her head that where it is still growing. She was happier, in a way, that her hair was fixed up and remarked that we should have done this before.
Things seemed a bit better today - Friday - she seemed a bit settled this evening. Needs a lot more sleep though. She has been playing Solitaire to keep occupied. Friends come around to see how she is going each day which is good.
Sometimes it feels like the working weeks are cold oceans between Macquarie Island weekends. Thanks to all who come and spend time with her.
Chemo Weeks are hard so here are the dates so that you know. She won't be up to doing much those weeks:
23/08/10 - 28/08/10
20/09/10 - 24/09/10
18/10/10 - 22/10/10
15/11/10 - 19/11/10
1312/10 - 17/12/10
My partner has been slowly recovering from her operation. Earlier in the week she was starting to suffer from increased difficulty with her speech and I was all ready to go and battle the neuro-surgical unit to get something done. Wehad not had word of how to manage the aspiration of any fluid that may have built up since then and it seemed like that was happening and this was becoming more and more stressful. However on Tuesday things were put right during a Haematology Clinic Appointment where the neuros took off 70 mls of fluid. It was a lot and they send some off to pathology which we have yet to get the results from.
She has had to go back on the Dex Meth. Each time she has gone off it something crazy happens so I am hoping staying on a small dose for longer may do the trick.
She seemed a lot more stable last night. Her writing and reading does not seem to have improved to the level it was before the operation and she seems to be having a harder time making a phone calls. It is getting more difficult to keep her spirits up and even though you don't want to it gets harder to maintain positivity in conversation. A good discovery has been that food and sweet things seem to help her speech and thinking and get rid of the depression she may sunk into at times duringthe day. I am looking forward to a week off from the fourth of September.
On Wednesday I shaved her hair on the side of her head that where it is still growing. She was happier, in a way, that her hair was fixed up and remarked that we should have done this before.
Things seemed a bit better today - Friday - she seemed a bit settled this evening. Needs a lot more sleep though. She has been playing Solitaire to keep occupied. Friends come around to see how she is going each day which is good.
Sometimes it feels like the working weeks are cold oceans between Macquarie Island weekends. Thanks to all who come and spend time with her.
Chemo Weeks are hard so here are the dates so that you know. She won't be up to doing much those weeks:
23/08/10 - 28/08/10
20/09/10 - 24/09/10
18/10/10 - 22/10/10
15/11/10 - 19/11/10
1312/10 - 17/12/10
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