Hello everyone.
This week Peter has developed what looks like an infection in the lungs as he was bringing up greenish/yellow phlegm for a few days and sounded like a middle eastern bubble pipe when he lay down. He has started on antibiotics and even after 2 and 1/2 days, it seems to be clearing a little and he is starting to respond well to it - less coughing and less of the green phlegm.
Peter has also been doing some of the exercises the physiotherapist provided us and I think that he is starting to have a little increase in his capacity and also is slightly less unsteady on his feet within the past couple of days. We do the exercises together and when the weather is sunny, mild and still, he will walk up and down the driveway for a few minutes.
Also yesterday, he sat up in the recliner chair in the family room for the majority of the day and we watched some of the Olympic telecasts together. I think this was good as he seemed to sleep better in the evening and also said he felt less isolated as I was buzzing around doing the washing and other things but he was in the main living area while I was doing it. I am not sure whether he will need to rest for most of today as a result but at least he was out of bed.
This coming week we have the occupational therapist coming to see about getting grab rails installed in the bathrooms and toilet areas as Peter feels very unsteady a lot of the time and there's not much to grab onto. Naturally, we don't want him to have a fall in the wet areas as it would not only physically hurt him but shake his confidence again.
I am also attempting to organise a CT scan this week and blood tests but the Medical Imaging department of The Canberra Hospital lost the referral I dropped into them last Tuesday and so I am still waiting for contact about that.
Apart from those we will have the regular twice weekly visit from the palliative care nurse and the GP visit and I hope to be able to get a couple of hours off on Tuesday afternoon.
Nothing much else to report except spring must be coming as the apricot tree is starting to get some buds and flowers, so I am hopeful of another plentiful harvest at Christmas time for some more jam and stewed apricots.
Thanks for your ongoing interest and concern for both of us. Best wishes - Leanne
Sunday, August 17, 2008
Monday, August 11, 2008
Monday 11 August 2008
A week has flown by so quickly and I realise I haven't made an entry into the blog since last Monday.
Minor progress this week. While the pain medication through the patches is not working all the time, we are using the additional break through pain medication only about 2 or 3 times a day, which is apparently not a problem. No weight gain but the dietitian says that stable weight is a good thing and it may well take another few weeks of re-nourishing and building up the essential baseline nutritional elements before weight is gained, if it is going to occur.
Some better nights' sleep to report this week as well, which is helping me a great deal, and the nursing staff have withdrawn now to attending only twice per week. This is because the central line in his arm has been removed so only his peg tube has to be taken care of and I swab and clean the tube site each day. We still haven't got the sweating under control but it seems a little less this week, perhaps due to not using a hot water bottle to warm the right side which ends up overheating the rest of his body.
Most importantly, Peter is looking better in the face each week.
We have had a busy 3 days. Peter had 3 of his oldest friends visit - 2 from Sydney (John and Judy) and one from Zurich (Imre) en route to Armidale. It was not something he was initially wanting to do but, as I thought, he warmed to the idea over a couple of days. So on Saturday I was doing the large weekly wash (it feels like we have a family of 5 now instead of just the two of us), groceries and cooking until late. Sunday, along with the usual medication, showering and other routines, I included further cooking and tidying up so that by their arrival in the afternoon for a late lunch, almost everything was done. Peter, to my surprise, said he would get out of bed and join us at the dining table while we ate - while he was hooked up to his food fluids. This seemed a bit cruel (that he had to watch us eat a lovely meal when he couldn't but it wasn't something about which he seemed concerned.)
He was up for 3 hours or more and was very engaged, despite having had a shot of hydromorphone he seemed to hold his own well and was not too exhausted when they left about 5pm. (I think he enjoyed the stimulation and so I will start to work on having some small visits from other people in the coming days, especially where they don't coincide with medical visits and appointments which he finds tiring.)
On the other hand, after giving Peter further fluids and medications, I dropped into the recliner chair and was out like a light for an hour or so before getting back up to do the rest of the evening routine.
Today we have had the physiotherapist visit to help Peter with some exercises to assist in removing phlegm and help breathing, re-establish some stability and develop strength in the legs and also provide some minor exercises to halt the withering of the right arm, if that's at all possible. Peter is very motivated to try to do some of these exercises and he was very enthusiastic about the ones which he can do in bed.
We have no other appointments until the end of the month when we see Dr Yip the oncologist again, so we have a couple of weeks of relative peace ahead.
In the last week, I have also managed to get a couple of small breaks through the volunteers and was able to go to the National Gallery with a friend on Wednesday for a couple of hours and a very quick 2 hour visit to the craft and quilt fair on Friday - enough to buy some beads and pearls for future jewellery making. It has been great to have these couple of breaks but the time flashes by so quickly that it seems no time before it's time to drive back again. I hope to do a bit of shopping and add a few more interesting visits or catching up with friends over the next couple of weeks.
Other news - it snowed here at our house yesterday (great large floating snowflakes, not the small icy spots of a couple fo weeks ago) for the 1st time ever. It was -4 degrees C to a maximum of 8 degrees C and one of our coldest maximums this year. Both Peter and I couldn't believe it. It only lasted about 25 minutes but I captured a couple of photos, which will show it up, hopefully.
Anyway, that's all for now. Au revoir - Leanne
Minor progress this week. While the pain medication through the patches is not working all the time, we are using the additional break through pain medication only about 2 or 3 times a day, which is apparently not a problem. No weight gain but the dietitian says that stable weight is a good thing and it may well take another few weeks of re-nourishing and building up the essential baseline nutritional elements before weight is gained, if it is going to occur.
Some better nights' sleep to report this week as well, which is helping me a great deal, and the nursing staff have withdrawn now to attending only twice per week. This is because the central line in his arm has been removed so only his peg tube has to be taken care of and I swab and clean the tube site each day. We still haven't got the sweating under control but it seems a little less this week, perhaps due to not using a hot water bottle to warm the right side which ends up overheating the rest of his body.
Most importantly, Peter is looking better in the face each week.
We have had a busy 3 days. Peter had 3 of his oldest friends visit - 2 from Sydney (John and Judy) and one from Zurich (Imre) en route to Armidale. It was not something he was initially wanting to do but, as I thought, he warmed to the idea over a couple of days. So on Saturday I was doing the large weekly wash (it feels like we have a family of 5 now instead of just the two of us), groceries and cooking until late. Sunday, along with the usual medication, showering and other routines, I included further cooking and tidying up so that by their arrival in the afternoon for a late lunch, almost everything was done. Peter, to my surprise, said he would get out of bed and join us at the dining table while we ate - while he was hooked up to his food fluids. This seemed a bit cruel (that he had to watch us eat a lovely meal when he couldn't but it wasn't something about which he seemed concerned.)
He was up for 3 hours or more and was very engaged, despite having had a shot of hydromorphone he seemed to hold his own well and was not too exhausted when they left about 5pm. (I think he enjoyed the stimulation and so I will start to work on having some small visits from other people in the coming days, especially where they don't coincide with medical visits and appointments which he finds tiring.)
On the other hand, after giving Peter further fluids and medications, I dropped into the recliner chair and was out like a light for an hour or so before getting back up to do the rest of the evening routine.
Today we have had the physiotherapist visit to help Peter with some exercises to assist in removing phlegm and help breathing, re-establish some stability and develop strength in the legs and also provide some minor exercises to halt the withering of the right arm, if that's at all possible. Peter is very motivated to try to do some of these exercises and he was very enthusiastic about the ones which he can do in bed.
We have no other appointments until the end of the month when we see Dr Yip the oncologist again, so we have a couple of weeks of relative peace ahead.
In the last week, I have also managed to get a couple of small breaks through the volunteers and was able to go to the National Gallery with a friend on Wednesday for a couple of hours and a very quick 2 hour visit to the craft and quilt fair on Friday - enough to buy some beads and pearls for future jewellery making. It has been great to have these couple of breaks but the time flashes by so quickly that it seems no time before it's time to drive back again. I hope to do a bit of shopping and add a few more interesting visits or catching up with friends over the next couple of weeks.
Other news - it snowed here at our house yesterday (great large floating snowflakes, not the small icy spots of a couple fo weeks ago) for the 1st time ever. It was -4 degrees C to a maximum of 8 degrees C and one of our coldest maximums this year. Both Peter and I couldn't believe it. It only lasted about 25 minutes but I captured a couple of photos, which will show it up, hopefully.
Anyway, that's all for now. Au revoir - Leanne
Monday, August 04, 2008
Monday 4 August 2008
The past 5 days have been tiring for both Peter and I.
Wednesday afternoon he had the gastroscopy (with dilation of oesophagus) with Dr Thomson and had no ill effects apart from a bit of pink sputum afterwards. Apparently Dr Thomson was able to dilate Peters' oesophagus some more but not to the extent that he can go back to eating anything much again. Peter is too frightened to try to swallow anything at the moment so I have made some chicken broth which I hope he will have a few sips when he feels ready.
On Wednesday we were also changing Peter's pain medication from the Hydromorphone through the syringe driver to Fentanyl patches and there was an imbalance in the pain relief so Peter had a disturbed night and was up 5 times which meant I was also up and we didn't get much sleep. The pain medication also gives him a heightened dream state and so he spends a lot of the night talking to people who are not there - which is a bit disconcerting for him but also doesn't make for a restful night for me either.
So Thursday was tiring from the sleep deprivation. The patches had also come off as Peter has been having problems with uncontrolled body temperature since the 2006 surgery excised half his thyroid, cut the vagus and sympathetic nerves and also took out the tumour under the right collar bone. What this has meant though, is that he is cold on his right side and normal to hot on his left and to warm up the right overheats his left and leads to sweats. The sweating then undermines all dressings and patches in a day rather than the several days for which some of them are meant to last.
Anyway, I think we have found a place (right arm) where it is cooler than the rest and which will mean the patches stay on the skin. If this doesn't work in the long term then we will have to go to an oral solution which I will feed through the peg tube.
Peter was less and less disturbed as the nights wore on but had a very bad one on Saturday night when I had to give him several "break through" medications into the peg tube.
Also of concern, we tried a tiny visit to the outdoors yesterday afternoon, but Peter fell off the roller walker while not having the brakes on and trying to move out of the breeze. He fell directly onto the cement of the front porch near the front door on his right side - lower ribs/waist area. He now has purplish-red bruise there and it was deeply distressing for both of us - as it all happened in a couple of seconds. I was able to lift him up and get him into bed but it was stressful and we were both shaken. He forgets that he doesn't have the strength and that he has to use the brakes. No ill effects this morning though (apart from a little more pain) and the palliative care nurse has seen him and his bruising and is not concerned. So that's a relief, but somewhat shakes Peter's (and my) confidence about trying to get him to walk or go outside.
I hope this week that the pain medication situation is under control and that I might be able to get a few hours off to do a couple of things outside the house. Unless more medical things intervene I have lined up the lovely pall care volunteer we have been allocated to come in to sit with Peter for a few hours. So that should be good, as Peter is understandably more anxious not to be left alone following the fall.
Apart from all of that, he is spending 95% of his time in bed, asleep much of the time.
Tomorrow it will be 4 weeks since we started him on full adult fluid feeding and I can see he looks so much better. Although he says he feels distinctly unwell regardless of how he looks.
I also gave him a haircut and trimmed up his beard on Friday (thanks to the trusty Big W hair clipper set) and he has shed about 20 years from his face in a few minutes. It's amazing what removing some of the grey and bushy hair has done to make such a difference.
However, his right arm is losing more strength and condition and he says it is full of pins and needles and he has lost the sensation of anything but pressure in that arm and hand - a very distressing thing and one which undermines his ability to function independently. Bizarrely, his right leg is stronger than his left so he has this asymmetrical strength which puts him off balance as well.
Hopefully this week will have less in the way of medical interventions and more rest and recreation for Peter, as I need to get the opportunity to try to build him up again both mentally and physically and none of that gets to happen if there's a lot on the schedule.
On other news, my mother is in her final week of radiotherapy and will then see the professor some weeks after that. So far, she reports, all has gone well but I haven't had the opportunity to see her so I can't verify that. However, she sounds good on the phone and her voice is usually a give-away if there's something wrong.
Au revoir for now - Leanne
Wednesday afternoon he had the gastroscopy (with dilation of oesophagus) with Dr Thomson and had no ill effects apart from a bit of pink sputum afterwards. Apparently Dr Thomson was able to dilate Peters' oesophagus some more but not to the extent that he can go back to eating anything much again. Peter is too frightened to try to swallow anything at the moment so I have made some chicken broth which I hope he will have a few sips when he feels ready.
On Wednesday we were also changing Peter's pain medication from the Hydromorphone through the syringe driver to Fentanyl patches and there was an imbalance in the pain relief so Peter had a disturbed night and was up 5 times which meant I was also up and we didn't get much sleep. The pain medication also gives him a heightened dream state and so he spends a lot of the night talking to people who are not there - which is a bit disconcerting for him but also doesn't make for a restful night for me either.
So Thursday was tiring from the sleep deprivation. The patches had also come off as Peter has been having problems with uncontrolled body temperature since the 2006 surgery excised half his thyroid, cut the vagus and sympathetic nerves and also took out the tumour under the right collar bone. What this has meant though, is that he is cold on his right side and normal to hot on his left and to warm up the right overheats his left and leads to sweats. The sweating then undermines all dressings and patches in a day rather than the several days for which some of them are meant to last.
Anyway, I think we have found a place (right arm) where it is cooler than the rest and which will mean the patches stay on the skin. If this doesn't work in the long term then we will have to go to an oral solution which I will feed through the peg tube.
Peter was less and less disturbed as the nights wore on but had a very bad one on Saturday night when I had to give him several "break through" medications into the peg tube.
Also of concern, we tried a tiny visit to the outdoors yesterday afternoon, but Peter fell off the roller walker while not having the brakes on and trying to move out of the breeze. He fell directly onto the cement of the front porch near the front door on his right side - lower ribs/waist area. He now has purplish-red bruise there and it was deeply distressing for both of us - as it all happened in a couple of seconds. I was able to lift him up and get him into bed but it was stressful and we were both shaken. He forgets that he doesn't have the strength and that he has to use the brakes. No ill effects this morning though (apart from a little more pain) and the palliative care nurse has seen him and his bruising and is not concerned. So that's a relief, but somewhat shakes Peter's (and my) confidence about trying to get him to walk or go outside.
I hope this week that the pain medication situation is under control and that I might be able to get a few hours off to do a couple of things outside the house. Unless more medical things intervene I have lined up the lovely pall care volunteer we have been allocated to come in to sit with Peter for a few hours. So that should be good, as Peter is understandably more anxious not to be left alone following the fall.
Apart from all of that, he is spending 95% of his time in bed, asleep much of the time.
Tomorrow it will be 4 weeks since we started him on full adult fluid feeding and I can see he looks so much better. Although he says he feels distinctly unwell regardless of how he looks.
I also gave him a haircut and trimmed up his beard on Friday (thanks to the trusty Big W hair clipper set) and he has shed about 20 years from his face in a few minutes. It's amazing what removing some of the grey and bushy hair has done to make such a difference.
However, his right arm is losing more strength and condition and he says it is full of pins and needles and he has lost the sensation of anything but pressure in that arm and hand - a very distressing thing and one which undermines his ability to function independently. Bizarrely, his right leg is stronger than his left so he has this asymmetrical strength which puts him off balance as well.
Hopefully this week will have less in the way of medical interventions and more rest and recreation for Peter, as I need to get the opportunity to try to build him up again both mentally and physically and none of that gets to happen if there's a lot on the schedule.
On other news, my mother is in her final week of radiotherapy and will then see the professor some weeks after that. So far, she reports, all has gone well but I haven't had the opportunity to see her so I can't verify that. However, she sounds good on the phone and her voice is usually a give-away if there's something wrong.
Au revoir for now - Leanne
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