Peter has had a very rough 4 days as the chemotherapy drugs have made him extremely nauseous despite all the anti-sickness medications. So just when he had started to eat a few mouthfuls again and was getting his old cheekiness back, he went downhill and hasn't been able to eat.
Yesterday afternoon he took 2 turns for the worst. At 4.15 and then 6.15 pm he propped himself up in bed on one elbow, started to say something and then collapsed out of bed onto his head, and had siezures. In the first one, he hit his head on the bedside cabinet at the temple and scraped his cheek but as he "slid" slowly out he didn't do too much damage. He had what looked to be a fit for about 15 or 20 seconds. He settled down and once back in bed seemed okay, but later complained of feeling short of breath, dizzy and his sight in the left eye was fuzzier than normal.
Later on, I thought he was going to the toilet but as he sat up in bed he just tumbled out onto his forehead straight onto the aluminium leg of the IV stand with his full weight. He went into a seizure and was not responding to speech. While I was only a metre or so away from him on the other side of the bed, I couldn't get to him in time to control the collapses but did get help immediately. The second time was worse - perhaps because of the fall directly onto the IV stand. He had a chicken egg size lump on his forehead within a minute and when he came around he was agitated, aggressive and was not making sense in anything he said, while trying to get out of the room. For around 20 minutes he was trying to escape the room, not making any sense and hitting out at anyone trying to restrain him. I talked to him and reassured him the whole time and finally got him back to bed. The nurses gave him a needle (not sure what was in it but probably some form of tranquiliser). Eventually he calmed down and when his specialist arrived 1/2 hour later it was as if nothing had happened.
So he was being sent for a brain scan last night. I came home to get some sleep and am just about to head back to spend the day with him. I will update the blog again as soon as I know more.
Saturday, May 31, 2008
Wednesday, May 28, 2008
Peter was getting a little better yesterday (Tuesday 27 May). He ate some breakfast and a few mouthfuls of food I had brought in for him for dinner(as the hospital stuff is pretty grim, tasteless and dubious in the extreme). He finally had some bowel movements after 2 weeks (sorry for the graphic nature of what I have to report) which was also cause for better humour. However, then he started on chemotherapy in the afternoon and he has rung me this morning (before I go in to spend the day with him) to let me know he now feels pretty nauseous and terrible.
The chemotherapy cycle is as follows: he is on Cisplatin on day 1 and 5FU for day 1 - 4 (that is 24 hours a day via a pump) via a PICC line into the arm, then he has 17 days off and starts the 21 day cycle again. He will have radiotherapy on the next cycle for 10 days. There could be up to 6 of the 21 day cycles over the next 4 months, which will again be through winter which Peter hates.
At the same time he will stay in hospital until he can show he can take enough fluids and eat something but I am hopeful he may be able to come home at the end of this week as he has been a bit "stir crazy" on a few occasions (he's been in for 15 days now). However, we found out last night that the stricture in his oesophagus is right at the base of the throat and the opening of his oesophagus is about the diameter of a ballpoint pen, which means that this is why he has trouble swallowing and it is likely that it will shrink again and need another dilatation or a stent placed inside to keep it open - both of these have risks of perforation and other issues. The stent might be very uncomfortable as well given that it will be so high up in what is left of his oesophagus. So we go one step forward and several back on every occasion. Peter is trying to get one thing at a time to work so that everything can come together in harmony at some stage but unfortunately it's not working out like that at the moment.
He is ambivalent about being in hospital - knowing on the one hand that it is the right place to be for the appropriate drugs, IV drips etc, but also not liking or bending to the hospital regimen.
I will write again in a few days.
The chemotherapy cycle is as follows: he is on Cisplatin on day 1 and 5FU for day 1 - 4 (that is 24 hours a day via a pump) via a PICC line into the arm, then he has 17 days off and starts the 21 day cycle again. He will have radiotherapy on the next cycle for 10 days. There could be up to 6 of the 21 day cycles over the next 4 months, which will again be through winter which Peter hates.
At the same time he will stay in hospital until he can show he can take enough fluids and eat something but I am hopeful he may be able to come home at the end of this week as he has been a bit "stir crazy" on a few occasions (he's been in for 15 days now). However, we found out last night that the stricture in his oesophagus is right at the base of the throat and the opening of his oesophagus is about the diameter of a ballpoint pen, which means that this is why he has trouble swallowing and it is likely that it will shrink again and need another dilatation or a stent placed inside to keep it open - both of these have risks of perforation and other issues. The stent might be very uncomfortable as well given that it will be so high up in what is left of his oesophagus. So we go one step forward and several back on every occasion. Peter is trying to get one thing at a time to work so that everything can come together in harmony at some stage but unfortunately it's not working out like that at the moment.
He is ambivalent about being in hospital - knowing on the one hand that it is the right place to be for the appropriate drugs, IV drips etc, but also not liking or bending to the hospital regimen.
I will write again in a few days.
Sunday, May 25, 2008
Latest Update
Today (Sunday 25th May), Peter was able to come home from hospital for a few hours. He was getting somewhat "stir crazy" and as he is currently unhooked from the IV drip and is on pain relief via a sub-cutaneous syringe driver, was able to spend a few hours at home away from the hospital routine which is wearing thin.
He may start chemotherapy tomorrow for around 3 weeks. He has been losing weight rapidly but has started to eat tiny amounts again now (but is refusing hospital "mush") so I am cooking some good Hungarian recipes and blending them to take into him. I can highly recommend Vizvári Mariska's Cream of Mushroom soup as an outstanding recipe and one he has appreciated.
I can, however, say that Rakott Krumpli (apologies to all Hungarians for my appalling spelling on these foods) when blended, is not that appealing to look at, but Peter seemed to enjoy it.
Will update again soon.
He may start chemotherapy tomorrow for around 3 weeks. He has been losing weight rapidly but has started to eat tiny amounts again now (but is refusing hospital "mush") so I am cooking some good Hungarian recipes and blending them to take into him. I can highly recommend Vizvári Mariska's Cream of Mushroom soup as an outstanding recipe and one he has appreciated.
I can, however, say that Rakott Krumpli (apologies to all Hungarians for my appalling spelling on these foods) when blended, is not that appealing to look at, but Peter seemed to enjoy it.
Will update again soon.
Wednesday, May 07, 2008
The other shoe HAS Dropped
I am afraid that I have had some really bad news today.
Most of you have been waiting with bated breath for the next exciting episode of my treatment in TCH on the next and subsequent visit to the Gastro Unit.
The good news is that this time the Dilation went well.
I was in at 8:oo and was treated extremely well.
I was allowed to keep my clothes on until the treatment was due and I was advised that if needed I could get all the warm blankets I needed. A very different approach from what I experienced a week ago. Indeed on this occasion I did not even have to take off my clothes when I went in for the treatment.
Some more good news, the doctor once again managed to dilate me up even further - but still not to a normal aperture which is around 18 (have no idea what the measure is)
I started off as 5 - am now at 12 and with any luck will be at a slightly higher number next time - I am due for the next round of this dilation treatment next Wednesday.
As usual, my doctor took biopsies as he extended his ability to see further down my oesophagus and this time the news from pathology was NOT good.
It appears that the cancer has returned.
Until I see the actual report I will not know what this means - but I suspect that I do not have many options left.
My instincts tell me that cutting it out is probably not possible and I have been advised in the past that radiation treatment is not available - I have had my fair share of rays.
This leave open the slim hope that there may be some response that my oncologist may be able to do something with chemo therapy.
I live in hope that this will be the case.
The doctors will no doubt be talking with each other and arriving at some opinion which of course I will publish here as soon as I know what it is.
In the interim there is nothing I can do about anything so I will take it one day at a time and just wait to hear what options they can suggest to me. I have advised my GP and hope that he will also have some time to get into the act and ask some questions.
All I know is that what I have dreaded for all these past weeks and months namely that the cancer had returned is NOT in my imagination and it has - the questions are where to what extent and what if any treatment besides palliative care is possible.
So for those of you who have been keeping your fingers crossed for me - it's time to relax the muscles and try some other technique - that one simply did not work!
I am sorry to be flippant about all this - I guess it has not yet sunk in that this time I really may be off to that last round up. It will, and I am sure that those of you familiar with the stages of bereavement will have a good idea about what stages I will go through from here on.
Suffice it to say that there will be a lot for Leanne and I to contend with as we learn the extent of this news and then what if anything happens next!
Most of you have been waiting with bated breath for the next exciting episode of my treatment in TCH on the next and subsequent visit to the Gastro Unit.
The good news is that this time the Dilation went well.
I was in at 8:oo and was treated extremely well.
I was allowed to keep my clothes on until the treatment was due and I was advised that if needed I could get all the warm blankets I needed. A very different approach from what I experienced a week ago. Indeed on this occasion I did not even have to take off my clothes when I went in for the treatment.
Some more good news, the doctor once again managed to dilate me up even further - but still not to a normal aperture which is around 18 (have no idea what the measure is)
I started off as 5 - am now at 12 and with any luck will be at a slightly higher number next time - I am due for the next round of this dilation treatment next Wednesday.
As usual, my doctor took biopsies as he extended his ability to see further down my oesophagus and this time the news from pathology was NOT good.
It appears that the cancer has returned.
Until I see the actual report I will not know what this means - but I suspect that I do not have many options left.
My instincts tell me that cutting it out is probably not possible and I have been advised in the past that radiation treatment is not available - I have had my fair share of rays.
This leave open the slim hope that there may be some response that my oncologist may be able to do something with chemo therapy.
I live in hope that this will be the case.
The doctors will no doubt be talking with each other and arriving at some opinion which of course I will publish here as soon as I know what it is.
In the interim there is nothing I can do about anything so I will take it one day at a time and just wait to hear what options they can suggest to me. I have advised my GP and hope that he will also have some time to get into the act and ask some questions.
All I know is that what I have dreaded for all these past weeks and months namely that the cancer had returned is NOT in my imagination and it has - the questions are where to what extent and what if any treatment besides palliative care is possible.
So for those of you who have been keeping your fingers crossed for me - it's time to relax the muscles and try some other technique - that one simply did not work!
I am sorry to be flippant about all this - I guess it has not yet sunk in that this time I really may be off to that last round up. It will, and I am sure that those of you familiar with the stages of bereavement will have a good idea about what stages I will go through from here on.
Suffice it to say that there will be a lot for Leanne and I to contend with as we learn the extent of this news and then what if anything happens next!
Thursday, May 01, 2008
Waiting for the other shoe to drop.
In my last post I mentioned that the biopsies that were taken and analysed did not show a return of the cancer. On going into the next round of treatment - which I had hoped would be the last, the doctor - in a moment of reassurance mentioned this fact while obtaining my consent to the procedure he was about to undertake. What he also mentioned, which was NOT so reassuring, was that another patient had had similar symptoms and that HIS biopsies had also come back negative, but when he died some time later, an autopsy revealed that the cancer had returned elsewhere.
If this was meant to be reassuring, I am afraid it did not quite manage to make it into that category.
As an example of the joys of the Public Health system I was invited to attend the Canberra Hospital at 11 am for this procedure which was - as I understood it to dilate the blockage at the join between my remnant oesophagus and remnant stomach.
Little did I know what lay in wait for me.
Arriving fashionably early - around 15 minutes to 11, I was told to go to "Admissions" across the corridor. Having done that, I followed some more interesting instructions which were to push a bell and await the joys of being interviewed, no doubt about my reason for being in the hospital and to fill out the admission papers.
A few minutes later a charming person came to fetch me from the waiting area and ushered me into her office. Here I was treated to the joys of the admission procedure which included telling my story (again) filling and signing forms for Medicare, my private health insurer, an agreement to pay the bills etc etc and eventually I was given a sheet of paper to take back to the Gastroenterology Department.
Here there was great attention paid to the documentation and I was finally given a referral to take to yet another part of the hospital for an ECG.
Finding this on another floor - yeah you guessed it - I was told to wait in a waiting area until they could do my test. Meanwhile of course time was flying and it was now way past the hour I had been told to report to the hospital. Still I hoped that someone knew what they were doing so I waited.
Finally a charming young woman called out my name and we proceeded to another room where numerous electrodes were attached and my ECG was obtained. Then back to the Gastro department. Here finally I was told to wait for a nurse who would insert a cannula.
A male nurse called Ramon called out my name and I got up to follow him. Meanwhile another couple, a charming old man and I assumed his wife had also started to follow him.
I made one of those charming noises that one learns when wanting to draw attention to oneself and both the elderly couple and the nurse turned around to give me a look.
"You have to wait your turn", said the nurse. "This is my turn I responded, you did ask for Garas did you not?"
Confused the poor man looked at me - looked at the old couple and looked at his documentation.
"Garas Peter George" he said. I looked apologetically at the old couple (privately wishing he had turned up his hearing aid) and mumbled, "Yes that's me!"
Confused the old couple went back to the waiting room and I was ushered into a largish room equipped with beds and told to change into a flimsy cotton surgical gown and then told to wait.
My bed just happened to be situated under a wonderful airconditioning duct that was blowing cold air - great!
Ramon (from the Phillipines) returned and - slick as you please he inserted the needle added the additional bits that made up the cannula and taped it up.
I was now there in bed with a single cotton 'blanket' and wondering what was coming next.
Being an idiot after nothing had happened by 11:45 I actually asked. I was told that I had to await the doctor who would obtain my consent to the procedure I would be having. 'Fair enough' I thought, and then asked the next question - "when might this take place since I was told to get here by 11 am ?"
"Oh the doctors always come here after lunch" I was told.
Say what?
"And when might this be - approximately?" I hesitantly asked.
"Right after their lunch about 1- 1:30 pm."
Lovely I thought, here I am freezing my arse off, having been told to fast since midnight last night, not being able to take any of my medication including the pain medication and it's going to be a few more hours yet! Wonderful!
I did ask for another blanket and I was given one straight out of the heating unit and it was simply blissful the warmth of the cotton blanket was a welcome relief to my aching body. Alas it did not last long under the influence of the cold air coming from the air conditioning unit!
At around 1:30 my doctor did arrive and obtained my consent to the procedure and told me that he would be able to see me reasonably quickly.
I waited.
Around 2:30 I was again terribly uncomfortable with the cold and the pain I once again dared to ask if perhaps since I normally took at least three sets of pain killer medications whether someone could think about giving me something for my pain in some manner that did not require me to take pills by the normal means - ie with water.
"You will just have to wait" was the response.
By now shivering with the cold and in intense pain I asked whether I could simply get back into the clothes I had arrived in - namely some track pants and a parka with pair of warm fleece lined boots.
"You will just have to wait", I was told "This is not the Private Hospital system if you get up to leave now you may not get back in for days or weeks!"
I managed to pull my parka from the bottom of the bed and wrapped it around the top of my body to try and get some warmth and started to try various different positions on the little bed to get more comfortable and to relieve the pain.
Another patient had gone and returned from her procedure and was crying softly asking for pain medication.
You guessed it - she also got the "you will just have to wait" message.
As her cries got louder and louder one nurse who shall forever remain nameless, said under her breath, "for Christ' sake get someone to give her a shot so she will shut up!"
Soon thereafter someone arrived to give her a shot and no doubt also suffering from the cold she actually did get dressed in her track suit and then crouched crying softly in a chair until the medication took hold.
Meanwhile the clock ticked mercilessly on!
At around half past four there was finally some action - an orderly came to take me up to X ray.
XRAY? I did not want to have an X ray I had been exposed to too much radiation as it was!
I was wheeled off by this stage absolutely numb from the cold and in pain that had moved from being just annoying to a level of pain that left me absolutely in agony.
We arrived outside the X ray room and patients were virtually double parked waiting for service.
Amazing!
A poor old lady with her daughter in attendance - sucking anxiously on her oxygen bottle was waiting for an orderly to take her back to her room. She looked in a bad way and made soft protesting noises and asked questions in heavily accented Italian from her daughter. I recognised the accent - Calabria!
Her daughter - more solicitous than the other staff, asked me if I was in pain - my facial contortions must have given her a clue! I responded that I was, but that there was nothing she could do about it, so please don't worry. I then pointed to her mother and asked "from Calabria?"
She told me yes with a really surprised sound in her voice - and asked how I knew - was I Italian?
'No,' I responded, 'I came across many Italian accents when I worked for Immigration way back in the 1970's and have not forgotten." She asked if spoke Italian and responded in what I hope was a good northern accent that I only spoke enough to order food and to ask my way.
Both she and her mother laughed at that and I felt good about being able to make someone else feel at ease even when my own situation was less than perfect.
An orderly finally came and she was wheeled away waving a fond farewell to me with her daughter wishing me well on my procedure.
About 4:45 I was finally wheeled into the X ray room and of course my doctor was there wearing a lead lined smock and being uncharacteristically quiet and withdrawn. I complimented him in what I hoped was a jocular fashion on his fetching lead lined outfit and he barely registered a smile.
I was given my needle to knock me out and things proceeded - the next I knew I was back in the freezer waking up and being told that the procedure had not gone well - I could not be adequately dilated and that we would have to do this again the following Monday - this time at 8 am!
With that the doctor was off and I was left to get back into my clothes and be taken home by my partner.
Quite a day.
I spent the night and most of the next day trying to recover from the pain and from the cold! It seemed to have seeped into my bones!
Can't honestly say I am looking forward to next Monday!
This next time I will NOT be taking off my clothes until they are ready to wheel me up to wherever they wish to take me - even an old duffer like me can learn from experience!
I wonder if all public hospital patients have similar experiences to the one I just had - if they do then critique of the health system is actually understated!
If this was meant to be reassuring, I am afraid it did not quite manage to make it into that category.
As an example of the joys of the Public Health system I was invited to attend the Canberra Hospital at 11 am for this procedure which was - as I understood it to dilate the blockage at the join between my remnant oesophagus and remnant stomach.
Little did I know what lay in wait for me.
Arriving fashionably early - around 15 minutes to 11, I was told to go to "Admissions" across the corridor. Having done that, I followed some more interesting instructions which were to push a bell and await the joys of being interviewed, no doubt about my reason for being in the hospital and to fill out the admission papers.
A few minutes later a charming person came to fetch me from the waiting area and ushered me into her office. Here I was treated to the joys of the admission procedure which included telling my story (again) filling and signing forms for Medicare, my private health insurer, an agreement to pay the bills etc etc and eventually I was given a sheet of paper to take back to the Gastroenterology Department.
Here there was great attention paid to the documentation and I was finally given a referral to take to yet another part of the hospital for an ECG.
Finding this on another floor - yeah you guessed it - I was told to wait in a waiting area until they could do my test. Meanwhile of course time was flying and it was now way past the hour I had been told to report to the hospital. Still I hoped that someone knew what they were doing so I waited.
Finally a charming young woman called out my name and we proceeded to another room where numerous electrodes were attached and my ECG was obtained. Then back to the Gastro department. Here finally I was told to wait for a nurse who would insert a cannula.
A male nurse called Ramon called out my name and I got up to follow him. Meanwhile another couple, a charming old man and I assumed his wife had also started to follow him.
I made one of those charming noises that one learns when wanting to draw attention to oneself and both the elderly couple and the nurse turned around to give me a look.
"You have to wait your turn", said the nurse. "This is my turn I responded, you did ask for Garas did you not?"
Confused the poor man looked at me - looked at the old couple and looked at his documentation.
"Garas Peter George" he said. I looked apologetically at the old couple (privately wishing he had turned up his hearing aid) and mumbled, "Yes that's me!"
Confused the old couple went back to the waiting room and I was ushered into a largish room equipped with beds and told to change into a flimsy cotton surgical gown and then told to wait.
My bed just happened to be situated under a wonderful airconditioning duct that was blowing cold air - great!
Ramon (from the Phillipines) returned and - slick as you please he inserted the needle added the additional bits that made up the cannula and taped it up.
I was now there in bed with a single cotton 'blanket' and wondering what was coming next.
Being an idiot after nothing had happened by 11:45 I actually asked. I was told that I had to await the doctor who would obtain my consent to the procedure I would be having. 'Fair enough' I thought, and then asked the next question - "when might this take place since I was told to get here by 11 am ?"
"Oh the doctors always come here after lunch" I was told.
Say what?
"And when might this be - approximately?" I hesitantly asked.
"Right after their lunch about 1- 1:30 pm."
Lovely I thought, here I am freezing my arse off, having been told to fast since midnight last night, not being able to take any of my medication including the pain medication and it's going to be a few more hours yet! Wonderful!
I did ask for another blanket and I was given one straight out of the heating unit and it was simply blissful the warmth of the cotton blanket was a welcome relief to my aching body. Alas it did not last long under the influence of the cold air coming from the air conditioning unit!
At around 1:30 my doctor did arrive and obtained my consent to the procedure and told me that he would be able to see me reasonably quickly.
I waited.
Around 2:30 I was again terribly uncomfortable with the cold and the pain I once again dared to ask if perhaps since I normally took at least three sets of pain killer medications whether someone could think about giving me something for my pain in some manner that did not require me to take pills by the normal means - ie with water.
"You will just have to wait" was the response.
By now shivering with the cold and in intense pain I asked whether I could simply get back into the clothes I had arrived in - namely some track pants and a parka with pair of warm fleece lined boots.
"You will just have to wait", I was told "This is not the Private Hospital system if you get up to leave now you may not get back in for days or weeks!"
I managed to pull my parka from the bottom of the bed and wrapped it around the top of my body to try and get some warmth and started to try various different positions on the little bed to get more comfortable and to relieve the pain.
Another patient had gone and returned from her procedure and was crying softly asking for pain medication.
You guessed it - she also got the "you will just have to wait" message.
As her cries got louder and louder one nurse who shall forever remain nameless, said under her breath, "for Christ' sake get someone to give her a shot so she will shut up!"
Soon thereafter someone arrived to give her a shot and no doubt also suffering from the cold she actually did get dressed in her track suit and then crouched crying softly in a chair until the medication took hold.
Meanwhile the clock ticked mercilessly on!
At around half past four there was finally some action - an orderly came to take me up to X ray.
XRAY? I did not want to have an X ray I had been exposed to too much radiation as it was!
I was wheeled off by this stage absolutely numb from the cold and in pain that had moved from being just annoying to a level of pain that left me absolutely in agony.
We arrived outside the X ray room and patients were virtually double parked waiting for service.
Amazing!
A poor old lady with her daughter in attendance - sucking anxiously on her oxygen bottle was waiting for an orderly to take her back to her room. She looked in a bad way and made soft protesting noises and asked questions in heavily accented Italian from her daughter. I recognised the accent - Calabria!
Her daughter - more solicitous than the other staff, asked me if I was in pain - my facial contortions must have given her a clue! I responded that I was, but that there was nothing she could do about it, so please don't worry. I then pointed to her mother and asked "from Calabria?"
She told me yes with a really surprised sound in her voice - and asked how I knew - was I Italian?
'No,' I responded, 'I came across many Italian accents when I worked for Immigration way back in the 1970's and have not forgotten." She asked if spoke Italian and responded in what I hope was a good northern accent that I only spoke enough to order food and to ask my way.
Both she and her mother laughed at that and I felt good about being able to make someone else feel at ease even when my own situation was less than perfect.
An orderly finally came and she was wheeled away waving a fond farewell to me with her daughter wishing me well on my procedure.
About 4:45 I was finally wheeled into the X ray room and of course my doctor was there wearing a lead lined smock and being uncharacteristically quiet and withdrawn. I complimented him in what I hoped was a jocular fashion on his fetching lead lined outfit and he barely registered a smile.
I was given my needle to knock me out and things proceeded - the next I knew I was back in the freezer waking up and being told that the procedure had not gone well - I could not be adequately dilated and that we would have to do this again the following Monday - this time at 8 am!
With that the doctor was off and I was left to get back into my clothes and be taken home by my partner.
Quite a day.
I spent the night and most of the next day trying to recover from the pain and from the cold! It seemed to have seeped into my bones!
Can't honestly say I am looking forward to next Monday!
This next time I will NOT be taking off my clothes until they are ready to wheel me up to wherever they wish to take me - even an old duffer like me can learn from experience!
I wonder if all public hospital patients have similar experiences to the one I just had - if they do then critique of the health system is actually understated!
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