Sorry but after today I keep thinking of the phrase "Never let a monkey to do a man's job". As I predicted yesterdays MRI showed a large residual amount of fluid that needed to be taken off. My partner had the usual 20 mls of fluid aspirated on Wednesday. Today the Neurosurgeon took off 40 mls. She is walking, dressing herself for the first time in 3 weeks. She is back in the land of the living. She no longer feels like she will start to pack it in and she is really pissed off at what she has had to suffer for months. The Neurosurgeon will be speaking to the Oncologist and I think we will finally have some closure to an episode of crap management. The cancer could hardly be seen. Oh for some over-arching case management in the medical system. How much do you have to go through to get something happening!
In the sick room, ten cents' worth of human understanding equals ten dollars' worth of medical science. ~Martin H. Fischer
Friday, February 18, 2011
Saturday, February 12, 2011
Taking it a day at a time
Last week was largish. That's an understatement. The 5 days that my partner has between aspirations shows such a contrast in her mobility. We are waiting for a referral from the oncologist to a neuro surgeon to see if there is anything that can be done about reducing the amount of fluid that seems to be building up slowly but surely more and more each aspiration period. There has not been any correspondence in the mail that the referral has been made even though it must be 3 weeks since the oncologist had sent it through.
My partner went to stay with my cousin to have some time away the last 3 days before her next aspiration. A holiday away from the cabin fever of our house suggested by our family social worker.
On Wednesday night, in the time out from helping her, my son and I go to to have dinner with my mother. As she was a doctor she remembers a friend of hers who is a professor of neurosurgery in another country, another place. She pulls the stops out next day and emails him. He replies that he will look for answers but in the meantime my partner should have a MRI which may determine the cause of the csf build up and why it is not draining away naturally. We are wondering why my partner can't have an abdominal drain like hyrocephalus sufferers have to stop fluid build up. On thursday morning she talks to a local neurosurgeons secretary who suggests talking to the hospital neurosurgeons nurse.
On Thursday lunchtime I go to see the neurosurgeon nurse to see why the referral is taking so long. The nurse isn't there but one of her colleagues is and can't find the referral. The nurse says it usually takes nine weeks before you can get to see a neurosurgeon through the clinic. Hmmm, nice to know. I tell her I really need the referral and my partner may probably not live that long if she has to wait that time. Then the nurse that has been suggested I see walks in the room. She finds the referral in two secs. As it is an internal referral it wont take nine weeks and to come to the clinic after my partners aspiration on friday. My adrenalin stops rushing.
On Friday I wake at 5:20am. I decide to make some pastries for a nice lunch for my partner and a friend of ours that usually comes to see her in the morning. He has a broken leg and is in the 4th week or so of sitting round at home feeling pretty bored with it all. Like her the swelling won't stop, its just that its in his leg not in his head! He was going to try to organise transport for my partner to see him at home. I decide that I'll organise transport for her to go there and be picked up by my mum who will take her to the hospital for her aspiration. By 7:20am the pastries are cooked, the transport is organised. By 7:45 I'm off to work. I wonder if I should be seeing a psychiatrist. Naah!
I catch up with my partner like I always do at oncology outpatients. The nurse who set up for the last aspiration is there. Five days ago she told my partner that she should accept that there is not much that can be done further and that she should consider her current treatment as now being palliative. "We are here to make you more comfortable before the...". She really pissed me off. It was like there there never mind just give up and die. I had spent 15 minutes explaining to this "nurse" my partners situation and finally got her to see if the referral had been made between the oncologist and the neurosurgeon. She said she would follow it up on Thursday. She hadn't bothered or had forgotten. Lucky I went and saw the neuro nurse I thought.
The registrar who usually does the aspiration was called away to an emergency. He was going to get someone else to perform it. We waited until 15 minutes before the neuro appointment. Then told the oncology nurse we had to go to that. We went to the neuro clinic to wait for the appointment. After 30 mins waiting I decided to go back and make sure the oncology doctor was there to do the aspiration. I was afraid that he would go home. I got there and the same oncology nurse said he might be there when we got back. I said its not "might" its " he will". The nurse at the computer behind her smirked.
It felt very much like the last time that we would spend waiting trussed up like bee larvae in vintage plastic rows of seventies airport chairs at that hospital. I think those chairs where passed on from when Tullamarine first opened. Adrian off the collecters would like them.
Cobwebs were being carefully woven around our armpits as we spent a wee time to see the neuro surgeon. I asked the nurse how much more time before we would see the neuro surgeon, we've got an aspiration to have back at oncology. She smiled, searched for my partners file in the pile, put it on top and said, "You're next".
The neurosurgeon took his time and answered all our questions. He ordered an MRI and scratched "urgent" on it. Urgent eh its the weekend. "It will be next tuesday at the earliest. I will see you next Friday." He explained that an abdominal drain would get clogged up from the protein that the remaining cancer cells were producing. He agreed there may be some options that there was a blockage in the natural csf drainage system from her brain into the ventricals...how it usually drains. He said they did not want to take out any further brain matter as it would cause serious impairment. That was about all that could be done. He would look at the MRI, see if there was a workaround. If not, the only other choice was to see if they should be taking more fluid off and there has been a residual buildup. We wheel my partner back to oncology in her wheelchair.
From the moment she has the CSF drained it is like a new beginning. A flower opening up in slow-mo. From favouring a wheelchair, feeling comes back to her right side, her speech improves and things are near to as normal as they can be for a few days. Life is worth being here for. Then things start to slip back. She loses mobility and by the 4th day she is barely able to walk her mobility is ever so slightly less that the last aspiration cycle. Not with as much mobility as the same time five days before. We wait for next week. Probably the last week that the possibility of interventionary treatment may help.
That night for a long time tears form in our eyes when we look at each other. I tell my son how it is.
My partner went to stay with my cousin to have some time away the last 3 days before her next aspiration. A holiday away from the cabin fever of our house suggested by our family social worker.
On Wednesday night, in the time out from helping her, my son and I go to to have dinner with my mother. As she was a doctor she remembers a friend of hers who is a professor of neurosurgery in another country, another place. She pulls the stops out next day and emails him. He replies that he will look for answers but in the meantime my partner should have a MRI which may determine the cause of the csf build up and why it is not draining away naturally. We are wondering why my partner can't have an abdominal drain like hyrocephalus sufferers have to stop fluid build up. On thursday morning she talks to a local neurosurgeons secretary who suggests talking to the hospital neurosurgeons nurse.
On Thursday lunchtime I go to see the neurosurgeon nurse to see why the referral is taking so long. The nurse isn't there but one of her colleagues is and can't find the referral. The nurse says it usually takes nine weeks before you can get to see a neurosurgeon through the clinic. Hmmm, nice to know. I tell her I really need the referral and my partner may probably not live that long if she has to wait that time. Then the nurse that has been suggested I see walks in the room. She finds the referral in two secs. As it is an internal referral it wont take nine weeks and to come to the clinic after my partners aspiration on friday. My adrenalin stops rushing.
On Friday I wake at 5:20am. I decide to make some pastries for a nice lunch for my partner and a friend of ours that usually comes to see her in the morning. He has a broken leg and is in the 4th week or so of sitting round at home feeling pretty bored with it all. Like her the swelling won't stop, its just that its in his leg not in his head! He was going to try to organise transport for my partner to see him at home. I decide that I'll organise transport for her to go there and be picked up by my mum who will take her to the hospital for her aspiration. By 7:20am the pastries are cooked, the transport is organised. By 7:45 I'm off to work. I wonder if I should be seeing a psychiatrist. Naah!
I catch up with my partner like I always do at oncology outpatients. The nurse who set up for the last aspiration is there. Five days ago she told my partner that she should accept that there is not much that can be done further and that she should consider her current treatment as now being palliative. "We are here to make you more comfortable before the...". She really pissed me off. It was like there there never mind just give up and die. I had spent 15 minutes explaining to this "nurse" my partners situation and finally got her to see if the referral had been made between the oncologist and the neurosurgeon. She said she would follow it up on Thursday. She hadn't bothered or had forgotten. Lucky I went and saw the neuro nurse I thought.
The registrar who usually does the aspiration was called away to an emergency. He was going to get someone else to perform it. We waited until 15 minutes before the neuro appointment. Then told the oncology nurse we had to go to that. We went to the neuro clinic to wait for the appointment. After 30 mins waiting I decided to go back and make sure the oncology doctor was there to do the aspiration. I was afraid that he would go home. I got there and the same oncology nurse said he might be there when we got back. I said its not "might" its " he will". The nurse at the computer behind her smirked.
It felt very much like the last time that we would spend waiting trussed up like bee larvae in vintage plastic rows of seventies airport chairs at that hospital. I think those chairs where passed on from when Tullamarine first opened. Adrian off the collecters would like them.
Cobwebs were being carefully woven around our armpits as we spent a wee time to see the neuro surgeon. I asked the nurse how much more time before we would see the neuro surgeon, we've got an aspiration to have back at oncology. She smiled, searched for my partners file in the pile, put it on top and said, "You're next".
The neurosurgeon took his time and answered all our questions. He ordered an MRI and scratched "urgent" on it. Urgent eh its the weekend. "It will be next tuesday at the earliest. I will see you next Friday." He explained that an abdominal drain would get clogged up from the protein that the remaining cancer cells were producing. He agreed there may be some options that there was a blockage in the natural csf drainage system from her brain into the ventricals...how it usually drains. He said they did not want to take out any further brain matter as it would cause serious impairment. That was about all that could be done. He would look at the MRI, see if there was a workaround. If not, the only other choice was to see if they should be taking more fluid off and there has been a residual buildup. We wheel my partner back to oncology in her wheelchair.
From the moment she has the CSF drained it is like a new beginning. A flower opening up in slow-mo. From favouring a wheelchair, feeling comes back to her right side, her speech improves and things are near to as normal as they can be for a few days. Life is worth being here for. Then things start to slip back. She loses mobility and by the 4th day she is barely able to walk her mobility is ever so slightly less that the last aspiration cycle. Not with as much mobility as the same time five days before. We wait for next week. Probably the last week that the possibility of interventionary treatment may help.
That night for a long time tears form in our eyes when we look at each other. I tell my son how it is.
Tuesday, January 18, 2011
1st Scan 1 Month Post Chemo
We have waited for the past week in anticipation of a result from this. It has been good news. The CSF has stabilised and the node of tumour that was left has shrunk even further so my partner is taking a further 2 months off without chemo with another review at the end of that time. Also being referred back to neurosurgeon for possibility of shunt being made internal to drain to the abdomen to stop the 5 day requirement of CSF aspiration. This would mean my partner would not have to be chained to the hospital on a less than weekly basis
Celebrated with Sushi platter!
Celebrated with Sushi platter!
Friday, December 17, 2010
End of Chemo
This morning is the morning after the last round of the six month cycle of chemo. My partner is very tired but looking forward to a long time without it. We will just have to hope that this is the beginning of something good, a view to a tranquil horizon perhaps! But its not all balls and skittles...
Getting ready for Xmas, an increased workload with an upgrade and one of my work team gone on leave, my partners birthday coming up means getting up earlier and doing as much as you can in the time you have. But I am beginning to find that this doesn't necessarily work! I am looking to a glass of cardboardonay in a calm void somewhere near Roaring Beach maybe!
Still there is not much of 2010 left. I will be very glad to thrust this year into the bin and listen to the garbage truck do its thing, take it on it's merry way to the relativity dump where it will not be recycled and end up in the exact centre of a black hole!
On another note, a semi trailer of thanks to all of you have helped us over the past year. Your friendship, correspondance and giving has helped masses. It makes you very much realise that it is the things we do for each other that clear the grime off the windows of an alpine hut and give you a fantastic view of the 2 feet of powder snow that fell during the night!
Merry Xmas and Happy New Year.
Getting ready for Xmas, an increased workload with an upgrade and one of my work team gone on leave, my partners birthday coming up means getting up earlier and doing as much as you can in the time you have. But I am beginning to find that this doesn't necessarily work! I am looking to a glass of cardboardonay in a calm void somewhere near Roaring Beach maybe!
Still there is not much of 2010 left. I will be very glad to thrust this year into the bin and listen to the garbage truck do its thing, take it on it's merry way to the relativity dump where it will not be recycled and end up in the exact centre of a black hole!
On another note, a semi trailer of thanks to all of you have helped us over the past year. Your friendship, correspondance and giving has helped masses. It makes you very much realise that it is the things we do for each other that clear the grime off the windows of an alpine hut and give you a fantastic view of the 2 feet of powder snow that fell during the night!
Merry Xmas and Happy New Year.
Wednesday, November 17, 2010
Its Been a While....
It has been quite a while since I have blogged. Hopefully this is a good thing! Touch large chunks of swamp gum. It seems like it but I better take a raincheck on that. Things have been pretty stable for us over the last month or so. Except issues with my sons exams. There does not seem to be much change in the excess fluid my partner is suffering from suffice to say that it fluctuates. I wish I could say that it is reducing but I guess we have to be patient.
As I write this my partner half way through the 5th round of Chemo. My partner had a Absence Sezuire the other night but this is apparently common with people recovering from brain surgery - according to our onc. It only lasted under a minute and she was able to swallow tablet of valium which had a good effect for that night. One more round left, then a scan and its what to do after that. Physically my partner has been getting stronger and going for longer walks. We may have overdone it the weekend before last though. Things fluctuate so much and there is little to discern definite improvement. All there is is to remain positive. People who spend time with her need to remember this. It keeps the black dog well away from us. Except for Sandy
Today my aunt is due do arrive from driving all the way from townsville as she could not fly due to her cancer and current condition. What an amazing feat. All that way. She is down for her daughters wedding which is at the weekend. I am hoping that my partner can attend the ceremony as she would like. She can't cope with the idea of going to the reception. Coping with groups of people is very exhausting for her.
My partner has taken the dog to the Dog Groomers. We just have not got around to it and she has turned into a lump of felt. Its great to see her getting out and organising things like this again!
As I write this my partner half way through the 5th round of Chemo. My partner had a Absence Sezuire the other night but this is apparently common with people recovering from brain surgery - according to our onc. It only lasted under a minute and she was able to swallow tablet of valium which had a good effect for that night. One more round left, then a scan and its what to do after that. Physically my partner has been getting stronger and going for longer walks. We may have overdone it the weekend before last though. Things fluctuate so much and there is little to discern definite improvement. All there is is to remain positive. People who spend time with her need to remember this. It keeps the black dog well away from us. Except for Sandy
Today my aunt is due do arrive from driving all the way from townsville as she could not fly due to her cancer and current condition. What an amazing feat. All that way. She is down for her daughters wedding which is at the weekend. I am hoping that my partner can attend the ceremony as she would like. She can't cope with the idea of going to the reception. Coping with groups of people is very exhausting for her.
My partner has taken the dog to the Dog Groomers. We just have not got around to it and she has turned into a lump of felt. Its great to see her getting out and organising things like this again!
Sunday, October 17, 2010
A Good Weekend in the Snow
We have had a good weekend and are ready to start the chemo. My partners sister came for the weekend so I took the chance to take some time out down to roaring beach. It must be about 4-5 months since I have been. On the way down I went for a walk up to the lookout from firetower road. At 427 metres snow had settled! It was wild but beautiful at the same time. I caught up with most of our friends down there and came back to a happy house for lunch round 2:15 pm with all the shopping done for the week.
Monday, October 11, 2010
Daylight Savors
My partner has had a few good weeks which is great. She has improved a lot and the increased amount of Dex Meth has been enough to give her a better quality of life without being zombied out. We don't know how long this can go on but one of her doctors says that they can usually sustain these kinds of levels for a month or so without it being detrimental.
We have had a good weekend with some great blue skies meaning that I have been doing some much required chores - painting the house etc. We are getting someone in to paint the roof this week which is a long awaited job. Something that I put off back in April.
The vegie garden has started to produce and we have had the first spanokopita from the garden with snow peas on the way and a crop of broccoli.
The doctor who usually does my partners aspiration is moving on. Hopefully they will have someone in to learn how to perform the procedure to take his place this week.
My partners sister comes to visit this weekend prior to the start of the 4th Chemo week. Time is flying.
Our son is slowly recovering from the loss of his friend. Him and his peers hang around a lot together. I know its what they need to do but exams are coming up and they all need to get down and study.
We have a few voluntary carers coming in a few times a week which takes the pressure off having to find people to be with my partner.
Things seem to be going more positive at the moment! Yay!
We have had a good weekend with some great blue skies meaning that I have been doing some much required chores - painting the house etc. We are getting someone in to paint the roof this week which is a long awaited job. Something that I put off back in April.
The vegie garden has started to produce and we have had the first spanokopita from the garden with snow peas on the way and a crop of broccoli.
The doctor who usually does my partners aspiration is moving on. Hopefully they will have someone in to learn how to perform the procedure to take his place this week.
My partners sister comes to visit this weekend prior to the start of the 4th Chemo week. Time is flying.
Our son is slowly recovering from the loss of his friend. Him and his peers hang around a lot together. I know its what they need to do but exams are coming up and they all need to get down and study.
We have a few voluntary carers coming in a few times a week which takes the pressure off having to find people to be with my partner.
Things seem to be going more positive at the moment! Yay!
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