My partner is halfway through the 6 months of chemo but the excess fluid will not piss off! She woke up and did some exercises to try to get some post chemo bowels going again and was so tired that she had a seziure. I called the ambos quick sticks and we got her some medication. At emergency she recovered more quickly than 2 3/4 months ago thanks to the quicker response. I was glad that this had not occurred a day later on the same night of the grand final. Being stuck in emergency at such a time would be very unlucky indeed. Fortunately it was quite that morning. Still it took from 8:00 am to 6:00 pm for us to get to the oncology ward. I think it is the atmosphere of emergency that gets you the most. Its all hype. You don't seem to see many older staff there. Is it the agility of mind, the naivity or learning the ropes that keeps them there!? All I know is that they do a fantastic job for all manner of clientelle, that is for sure.
We only just got to see my partners oncologist as we just got to the ward at 5:55 or so. I was watching the time and spurred on by my partner kept on harassing the nurse that was in charge to go to the ward. We were admitted to the oncology ward in mid afternoon but it took the best part of 3 hours for the communication between the hand and mouth to work. Emergency was getting busier and busier and humming up for a torrid Friday Nort. Patients were being found other beds outside of emergency hither and thither.
My partner was completely exhausted by not only the sezuire but all that was going on as well. Needless to say she had a good nights sleep.
I got home but did not feel like hitting the hay at a reasonable time. I think it must be the build up of adrenalin. I used to find it hard going to bed after playing sax in bands in pubs. It took a while for the adrenalin to wear off. This seemed like the same.
On Saturday we watched the Grand Final. She was recovering well. The dex meth went up and she had an aspiration in the afternoon. Unlike the weekly aspirations she has had, this was much more formal with gowns and so forth. They took of 15ml of fluid and she felt much better with her hand and speech improving almost immeadiately afterwards. I called a few of her mates to keep them up-to-date, got her some fresh clothes. I went home and the same thing happened in the night. Promised going to bed early and didn't!
Today a good bevvy of friends visited. This lifted her spirits. Her oncologist is waiting to query the radiologists to find out the status of the cancer. She could not get to see the results on Friday. It looks as if my partner will be in until at least tomorrow.
Sometimes she wants to chuck it all in and stop taking the tablets. Today, talking to the doctors she said she wanted to. I keep convincing her that she should give things a bit more time. If we can get her to a stage of managing the fluid and it eventually subsiding her quality of life may improve that she may get to feel more positive about her situation. If she can build up a tolerance to the dex meth we may be in a better position.
I get worried about her being at home and another sezuire occurring with no one around and her not being able to press the button to call the red cross.
Thats enough for now.
Sunday, September 26, 2010
Tuesday, September 21, 2010
Chemo Meemo
Things are getting fairly stable around these parts again. Touch wood! My son is back to school today after being a bit wary of going back after what has happened. His friend who was driving and has the accident can't yet cope with the idea of going back to school, poor lad.
My partner is a bit better about chemo and seems to be managing it better than the last time. We had a great long chat to another oncologist today which brought out a few realisations. One of them was that my partner has been on a treatment programme since the time that her tumour was removed. She had not realised that this was the case and thought that the programme she was on now was related to the operation to put in the shunt. She did not realise that all had been organised from ground zero.
It is getting warmer here and spring is starting to happen. My partner does things around the house, goes for walks and has helped with meals here and there. She gets hung up about not being able to cook. I commented to her tonight, "Geez some real blokes nevers learneds tooz cooks so don't chuz worry abouts cookins yerselveses luvs!"
She gets about with friends and family during the day and is slowly getting used to the scope of what she is now capable of. Things that she once did and once had the capability of but now can't or no longer are needed seem to be fading into the past slowly. Maybe the ache of having lost those things from her life will fade too.
My partner is a bit better about chemo and seems to be managing it better than the last time. We had a great long chat to another oncologist today which brought out a few realisations. One of them was that my partner has been on a treatment programme since the time that her tumour was removed. She had not realised that this was the case and thought that the programme she was on now was related to the operation to put in the shunt. She did not realise that all had been organised from ground zero.
It is getting warmer here and spring is starting to happen. My partner does things around the house, goes for walks and has helped with meals here and there. She gets hung up about not being able to cook. I commented to her tonight, "Geez some real blokes nevers learneds tooz cooks so don't chuz worry abouts cookins yerselveses luvs!"
She gets about with friends and family during the day and is slowly getting used to the scope of what she is now capable of. Things that she once did and once had the capability of but now can't or no longer are needed seem to be fading into the past slowly. Maybe the ache of having lost those things from her life will fade too.
Monday, September 13, 2010
Improvements during Sad Times
My partner has been doing really well this week. She has been much more stable and her spirits have been much higher and she has been able to do a few more things and feel more competent. She still needs more Dex towards the end of weeks between aspirations. So good improvements there.
But a very sad thing has happened to my son last week. I can't believe the fate that we are having to endure at the moment. It has simply been unreal.
My son went down to stay at our land at Roaring Beach last week with a group of friends for a holiday surfing trip with happy times around the campsite. My partner and I had gone to stay with friends together for the first time in five months. We had a great afternoon with beautiful weather.
Around 5-6pm I got a call from a friend that a girl had died in a car accident on Roaring Beach Road. She was one of the friends that had been camping with my son. Since this happened my son and the young friends that went camping together have been staying with each other at each others places and keeping company since last Tuesday. The funeral was today. It has been a shock to us all and our hearts go out to her family.
But a very sad thing has happened to my son last week. I can't believe the fate that we are having to endure at the moment. It has simply been unreal.
My son went down to stay at our land at Roaring Beach last week with a group of friends for a holiday surfing trip with happy times around the campsite. My partner and I had gone to stay with friends together for the first time in five months. We had a great afternoon with beautiful weather.
Around 5-6pm I got a call from a friend that a girl had died in a car accident on Roaring Beach Road. She was one of the friends that had been camping with my son. Since this happened my son and the young friends that went camping together have been staying with each other at each others places and keeping company since last Tuesday. The funeral was today. It has been a shock to us all and our hearts go out to her family.
Tuesday, August 31, 2010
The Dex Meth Blues
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!
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!
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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