Monday, February 28, 2011
Natalya, Helen and Lil at the Ski Club
Documentary proof Helen is better - this was unimaginable before I left Darwin!
Sunday, February 27, 2011
26th February 2011
Good news! Helen has improved a lot. It's a bit mysterious to understand - I must say I wish I felt there was an all knowing, all powerful wise and caring health provider giving an overview to our situation (this person doesn't really exist outside my fantasy - no serious reflection on the actual health providers involved). We can deal with anything but the ongoing guesswork and uncertainties are so exhausting.
Current theories: she did seem to have a urinary tract infection (which can affect mental state) but after 3 days on the correct antibiotic there wasn't much improvement - more just a stabilising state; she might have had a virus - dry cough and conjunctivitis after we had a baby to stay who was sick and whilst I had viral symptoms; she might have some peculiar ongoing inflammatory process which was revealed by stopping steroids on the 8th Feb. Against the steroid theory - she was only on a tiny tiny dose for months before stopping, various specialists suggested stopping it and thought it could not be doing anything useful at this stage, she didn't seem dramatically worse until ~ 10 days after stopping it (when she had probably caught the UTI plus/minus virus). For the steroid theory - she improved enormously after 2 doses of steroid. Started again (at a higher dose) on the 24th Feb. Also for - she started to develop pink spots over her torso, arms and face again which looked a bit vasculitic and which she used to have earlier in the illness and her GP theorised that she may have had a vasculitis affecting her brain (probably induced by cancer hormones) which caused the original mania. Another theory (my own) is that having been on steroids constantly in one form or another since Sept 09 her own body's capacity to make a steroid response to stressors is totally downregulated or absent and getting UTI/virus sent her over the edge into Addisons.
Anyway as you can no doubt see the lack of anyone else seeming to be in charge or thinking about all of this means that I think about it all a lot! The bottom line is she is so much better now - alert, able to have interesting conversations, eating, no problems swallowing. Not sleeping all day long. Able to walk safely to the toilet. Still intermittently confused but a bit more like she was in Melbourne - yesterday developed the belief that she was in an "office" and couldn't let go of this.
On Thursday her friend Marlene made a long visit and Mum was able to enjoy all of this which was really lovely as she hadn't seen Marlene for many months. Other enjoyable events of the week included visits from Shirley and Lil (recently back from showing her work in Indonesia), a Vision Australia "Quality Living" telephone group (the first one), listening to talking books and the company of Natalya (my friend from Melbourne who has come to be Helen's carer for a week).
Mum has said several times of Natalya "I think she's lovely" which makes it much easier for me to go away for a bit - plus the fact that Natalya demonstrably is lovely and also that Helen has stopped deteriorating and in fact improved!
I am now in Hawaii of all places - for a week - visiting my friend Shannon and family who normally live in Seattle. Louis will come to Darwin to take over from Natalya on Monday and I will return to Australia and Darwin a week later.
Hence this blog will lapse for a week unless I learn anything important long distance.
Current theories: she did seem to have a urinary tract infection (which can affect mental state) but after 3 days on the correct antibiotic there wasn't much improvement - more just a stabilising state; she might have had a virus - dry cough and conjunctivitis after we had a baby to stay who was sick and whilst I had viral symptoms; she might have some peculiar ongoing inflammatory process which was revealed by stopping steroids on the 8th Feb. Against the steroid theory - she was only on a tiny tiny dose for months before stopping, various specialists suggested stopping it and thought it could not be doing anything useful at this stage, she didn't seem dramatically worse until ~ 10 days after stopping it (when she had probably caught the UTI plus/minus virus). For the steroid theory - she improved enormously after 2 doses of steroid. Started again (at a higher dose) on the 24th Feb. Also for - she started to develop pink spots over her torso, arms and face again which looked a bit vasculitic and which she used to have earlier in the illness and her GP theorised that she may have had a vasculitis affecting her brain (probably induced by cancer hormones) which caused the original mania. Another theory (my own) is that having been on steroids constantly in one form or another since Sept 09 her own body's capacity to make a steroid response to stressors is totally downregulated or absent and getting UTI/virus sent her over the edge into Addisons.
Anyway as you can no doubt see the lack of anyone else seeming to be in charge or thinking about all of this means that I think about it all a lot! The bottom line is she is so much better now - alert, able to have interesting conversations, eating, no problems swallowing. Not sleeping all day long. Able to walk safely to the toilet. Still intermittently confused but a bit more like she was in Melbourne - yesterday developed the belief that she was in an "office" and couldn't let go of this.
On Thursday her friend Marlene made a long visit and Mum was able to enjoy all of this which was really lovely as she hadn't seen Marlene for many months. Other enjoyable events of the week included visits from Shirley and Lil (recently back from showing her work in Indonesia), a Vision Australia "Quality Living" telephone group (the first one), listening to talking books and the company of Natalya (my friend from Melbourne who has come to be Helen's carer for a week).
Mum has said several times of Natalya "I think she's lovely" which makes it much easier for me to go away for a bit - plus the fact that Natalya demonstrably is lovely and also that Helen has stopped deteriorating and in fact improved!
I am now in Hawaii of all places - for a week - visiting my friend Shannon and family who normally live in Seattle. Louis will come to Darwin to take over from Natalya on Monday and I will return to Australia and Darwin a week later.
Hence this blog will lapse for a week unless I learn anything important long distance.
Tuesday, February 22, 2011
Tuesday 22nd February 2011
Over the last 4 days or so and even possibly a little longer, Helen has been not herself. Gradually slower in movement and thought, more frequently and more profoundly confused and increasingly drowsy. Also has irritating conjunctivitis.
On Saturday night when I was still here on my own and on a bit of a peak of anxiety and distress following on the week just gone, I suddenly had a panic and called the after hours nurses back in to help me decide what to do. They thought (as is likely really) that maybe it is a urinary tract infection so on Sunday we sent off a sample and yesterday she started an empirical antibiotic plus some drops for her eyes. No improvement at all so far so we'll see how she goes.
A more sinister possibility would be something happening inside her brain such as reactivated metastases or new metastases but the palliative care team are aware of the situation and of her and will follow this up if she doesn't get better with the antibiotics. This is all unfortunate timing as my friend Natalya has just arrived from Melbourne (Sun night - having been delayed by the cyclone last Wednesday) to start learning how to look after Helen so I can go away for a break. Helen's current state means natalya hasn't got a very reliable baseline to start with in terms of how Helen is "normally" which certainly makes it more challenging. She has got phone numbers for some friends and family who know Helen better and can offer some comment - so don't be too surprised if you get a call.
Unless she really deteriorates I still plan to go away but not quite sure when (or where) - possibly Wednesday morning. Louis should arrive when Natalya leaves on the 28th to take over again so I don't have to come straight back and from the 2nd March we have planned for a private carer called Jo to start caring for Helen on Mondays, Wednesdays and Thursdays.
On Saturday night when I was still here on my own and on a bit of a peak of anxiety and distress following on the week just gone, I suddenly had a panic and called the after hours nurses back in to help me decide what to do. They thought (as is likely really) that maybe it is a urinary tract infection so on Sunday we sent off a sample and yesterday she started an empirical antibiotic plus some drops for her eyes. No improvement at all so far so we'll see how she goes.
A more sinister possibility would be something happening inside her brain such as reactivated metastases or new metastases but the palliative care team are aware of the situation and of her and will follow this up if she doesn't get better with the antibiotics. This is all unfortunate timing as my friend Natalya has just arrived from Melbourne (Sun night - having been delayed by the cyclone last Wednesday) to start learning how to look after Helen so I can go away for a break. Helen's current state means natalya hasn't got a very reliable baseline to start with in terms of how Helen is "normally" which certainly makes it more challenging. She has got phone numbers for some friends and family who know Helen better and can offer some comment - so don't be too surprised if you get a call.
Unless she really deteriorates I still plan to go away but not quite sure when (or where) - possibly Wednesday morning. Louis should arrive when Natalya leaves on the 28th to take over again so I don't have to come straight back and from the 2nd March we have planned for a private carer called Jo to start caring for Helen on Mondays, Wednesdays and Thursdays.
Thursday, February 17, 2011
17th February 2011
A brief summary of life in Darwin since our return - medical appointments as mentioned with oncology and palliative care and also with Mum's new GP Dr S as Dr G has moved to Tasmania; allied health appointments with audiology and physio; social visits with Shirley and Kaye and Lil; an outing to Diane's house; a trip to see "The King's Speech"; a week's visit from Wendy and Sarah and baby Aisling from Brisbane; baby Aisling learning to walk (aged 1 and 1 week); excursions to Frillies and to Rapid Creek markets; a Cat One Cyclone and some very windy weather!
I've asked Rory the private physio to visit 4 times a week to try to keep up some of Helen's physical gains from Melbourne. He thinks she is doing well and stronger overall but I must say in the day to day I don't really notice this and feel worried that she will just sit in her chair until she is completely deconditioned again. I try to encourage her to do a little practice but she's not terribly keen.
The audiologist gave us the sad news that the radiation damage to hearing will be ongoing and we can expect a continual slow decline requiring adjustment and increase of her hearing aids every few months.
She has come off her steroid medication all together which is a good thing but has certainly had a noticeable decrease in appetite, enjoyment of food and energy levels.
We have joined the Vision Australia Library and received one of their special CD players. Lately Helen has been enjoying Piano Lessons by Anna Goldsworthy and People of the Book by Geraldine Brooks.
She is due to join a telephone based Book Group run by Vision Australia on the 8th March and is on the wait list for a support group called Quality Living with others who have recently lost their vision.
I have generally been finding the caring role much more difficult than before - I feel as if my reserves are used up and also my long term on/off depression is starting to manifest again.
To try to address this I have been to NT carers to organise for more respite and a friend from Melbourne called Natalya is coming next week to let me go away for a bit. From the second of March we have found a private carer who can start doing 3 x 10 hr days a week - Mondays, Wednesdays and Thursdays - her name is Jo, she is a friend of a friend and seems lovely. Probably Louis will come up to Darwin on ~ the 28th Feb (he has been having a bit of a catch up with his Brisbane life).
i have been offered some more work in Darwin through March but haven't committed to this as yet - feel like I need to see how everything is going.
In terms of the cyclone it turned out to be a bit of an anticlimax for us in some ways.
Tuesday night when it was just a "Warning" was much worse than Wednesday night when it was supposed to be an actual cyclone!
Tuesday I had a 4 hour shift in Palmerston at the Urgent After Hours Clinic and had organised "emergency" respite with NT Carers with a lovely woman named Kristy.
When my shift ended at 10pm I started to drive back to Darwin (about 20km away). After about 3min of driving I realised I had made a big mistake. Extreme wind and rain, potholes, flooding, no streetlights and the strong feeling that I was doing something culpably stupid!
I turned back to the clinic. As it turned out the other doctor who was supposed to take over really wanted to stay home and Kristy wasn't able to get home herself so I stayed at work and saw patients (in a very sturdy safe feeling building) and poor Kristy stayed home with Helen in The Gardens with the power out and the electric recliner stuck half up and sat by Helen's bedside all night! I didn't get home til ~ 10 am the next day. The rest of Wednesday was a frantic cyclone preparation day and 2 friends of Shirley's came over to give me advice and support. In the end Tim E stayed over as well so we were very well looked after and in any case the weather on Wednesday really wasn't that bad!
Although we listened to the cyclone news fairly constantly Helen was pretty unfazed by the whole thing. Just as well I guess.
I've asked Rory the private physio to visit 4 times a week to try to keep up some of Helen's physical gains from Melbourne. He thinks she is doing well and stronger overall but I must say in the day to day I don't really notice this and feel worried that she will just sit in her chair until she is completely deconditioned again. I try to encourage her to do a little practice but she's not terribly keen.
The audiologist gave us the sad news that the radiation damage to hearing will be ongoing and we can expect a continual slow decline requiring adjustment and increase of her hearing aids every few months.
She has come off her steroid medication all together which is a good thing but has certainly had a noticeable decrease in appetite, enjoyment of food and energy levels.
We have joined the Vision Australia Library and received one of their special CD players. Lately Helen has been enjoying Piano Lessons by Anna Goldsworthy and People of the Book by Geraldine Brooks.
She is due to join a telephone based Book Group run by Vision Australia on the 8th March and is on the wait list for a support group called Quality Living with others who have recently lost their vision.
I have generally been finding the caring role much more difficult than before - I feel as if my reserves are used up and also my long term on/off depression is starting to manifest again.
To try to address this I have been to NT carers to organise for more respite and a friend from Melbourne called Natalya is coming next week to let me go away for a bit. From the second of March we have found a private carer who can start doing 3 x 10 hr days a week - Mondays, Wednesdays and Thursdays - her name is Jo, she is a friend of a friend and seems lovely. Probably Louis will come up to Darwin on ~ the 28th Feb (he has been having a bit of a catch up with his Brisbane life).
i have been offered some more work in Darwin through March but haven't committed to this as yet - feel like I need to see how everything is going.
In terms of the cyclone it turned out to be a bit of an anticlimax for us in some ways.
Tuesday night when it was just a "Warning" was much worse than Wednesday night when it was supposed to be an actual cyclone!
Tuesday I had a 4 hour shift in Palmerston at the Urgent After Hours Clinic and had organised "emergency" respite with NT Carers with a lovely woman named Kristy.
When my shift ended at 10pm I started to drive back to Darwin (about 20km away). After about 3min of driving I realised I had made a big mistake. Extreme wind and rain, potholes, flooding, no streetlights and the strong feeling that I was doing something culpably stupid!
I turned back to the clinic. As it turned out the other doctor who was supposed to take over really wanted to stay home and Kristy wasn't able to get home herself so I stayed at work and saw patients (in a very sturdy safe feeling building) and poor Kristy stayed home with Helen in The Gardens with the power out and the electric recliner stuck half up and sat by Helen's bedside all night! I didn't get home til ~ 10 am the next day. The rest of Wednesday was a frantic cyclone preparation day and 2 friends of Shirley's came over to give me advice and support. In the end Tim E stayed over as well so we were very well looked after and in any case the weather on Wednesday really wasn't that bad!
Although we listened to the cyclone news fairly constantly Helen was pretty unfazed by the whole thing. Just as well I guess.
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