Sunday, February 20, 2011
Keep your fingers crossed
we will be going for another aspiration tomorrow. I am not sure how they want to play it and will have to be back to check out whether anything has been arranged. My partner wasn't as good as she was yesterday so it may take her quite a long time to fully recover. I am hoping this is the case. She did walk around the block yesterday. Yay! Something she has not done for a month and a half. Keep your fingers crossed that today is part of recovery and not something of a permanent issue.
Friday, February 18, 2011
Ex-Aspiration
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
In the sick room, ten cents' worth of human understanding equals ten dollars' worth of medical science. ~Martin H. Fischer
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.
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