What a week we have had! But then, on recollection, I seem to say that each week. Peter's condition worsened on Monday and by Tuesday when we went to see Dr Yip, the oncologist, he was in great pain and feeling pretty poor all round. Dr Yip gave us another script for antibiotics as it is clear this chest infection is more stubborn.
However, there are 3 pieces of good news to gladden my heart.
The first good news is that the blood results show many signs of improvement on a range of the results.
However, there is poor uptake of thyroid medication. This can be attributed to some of the other things he is taking which interact with the effectiveness of the thyroxine and also that I was told to give the tablets to him first thing in the morning, which I have been doing religiously, only to find, when I found a product statement in the box in the fridge that I should have been giving him that either an hour before food or 3 hours after. So giving it to him as soon as his feed had ceased in the morning was not the right time at all and probably inhibited his uptake of the drug. I have since amended that practice and Dr Yip has increased his intake to 100 mcg so we will have to see if both those things make Peter feel better or not.
Starting on the antibiotic again on Tuesday afternoon has started to make a difference to the infection. Dr Yip also said the CT scan showed a large amount of liquid on the right lung.
The second piece of good-ish news is that the CT showed the cancer tumours are stable at the moment and so no extra chemotherapy is currently considered, especially with this infection. I had hoped that the news would be that they had shrunk or gone (that's a faint hope I know), but at least being stable is better than the verdict that they have grown.
The third piece of good news is that since I last weighed Peter a few weeks ago he has put on over 2 kilos in weight and is now about 70 kilos. Needing new batteries for the scales, and forgetting to buy them every time I was at the shops, meant that it's been a while since the last weighing. I can see there's slightly more of Peter now and he looks less malnourished.
Other good news is that Dr Pacl, the pain specialist (and gem beyond price or as Peter says "at last a competent doctor!") has increased his pain medication to 200 mcg of Fentanyl patches every 2 days and has given us a couple of practical hints to assist breathing. One of which is assisting already - "Breathe Easy Nasal strips" to assist in keeping the right nasal passage open. What magic!!
On the pain side, this is continuing to be a battle. Peter is back on Lyrica, an anti-epileptic drug which has been knocking him for six - hallucinations, unsteadiness on his feet, groggy and slurring speech to name a few of the side effects Hopefully these will get under control and Dr Pacl has knocked the dose in half for a few days to see if that helps.
The problem with this is that it has set back his exercise and physical improvement plan as he is so unsteady and groggy that he's not safe on his feet. He has also been having continuous and involuntary body jerking which is worrying in terms of perhaps falling out of the recliner chair or bed.
The issue with the hallucinations is that while some of them are amusing (after the fact), some are dangerous. On Friday night, we had a really bad time. Instead of Peter being up about 3 times in the night and needing some assistance, on Friday it was over 8 times and some were distressing. On one occasion I heard him get up and saw him walking towards the bedroom door with the feed tube still attached and the possibility that the IV pole would fall on top of him and the peg tube be ripped out of his duodenum. I yelled "Stop, stop, stop" and he came to in time for me to get him back to bed before any damage was done. He told me he had to get through the doors as there was a machine there for the French and German governments that he had to see to. Earlier, I heard something happening with the IV pole and found him grabbing it and it leaning at a dangerous angle over him in bed with a full bottle of feed. Previously, when I was in the family room watching TV he had tried to climb over the bed to the phone to ring me as he had dreamt that he had received a message from me that I was in trouble and needed help.
The problem is he currently can't decipher between what is a dream and reality this week and I think it is all connected to the increased and extra medication he is on. Still his "projects" as he calls them are pretty interesting and complex. He just told me he was waiting on some paperwork for some legal cases; yesterday, he was negotiating a multi-million dollar contract and also working on negotiating a resolution in the Balkans as well as being at the UN. He often sees people in the room and talks to them. My main concern is that he doesn't hurt himself, doesn't fall or pull out the peg tube as the latter is a serious problem. Apparently the peg site would close over within 2 hours and he would have to be admitted to hospital for a new one to be put in and this one was very difficult to insert, but without it he has no means of getting fluids or nourishment and that just cannot be allowed to happen. If he falls or can't get around (at least the few steps to and from the bathroom) then that would make it really difficult to be able to keep caring for him at home on my own (unless there are some other you-beaut aids that would assist me) and that is something I just do not want to contemplate.
So at night, the bedroom is very noisy - usually the oxygen machine is on, the feed machine is on, Peter is moving in bed constantly, talking/whispering to his hallucinations, coughing up sputum and his chest is bubbling like a middle eastern water pipe. If I can get to sleep then I am woken by Peter needing to go to the toilet and he needs help to manoeuvre the IV pole around and get safely out of the bathroom. Unfortunately, I don't just go back to sleep so often I am just dozing off again when he needs something else an hour or so later. Some days it is okay and I don't feel too bad but sleep deprivation does make me a bit snappish and so having a nap in the afternoon, wherever possible has now become a must so I can build up a little store of sleep against the evening when it might not be possible to get very much and so I can be as helpful to Peter as possible.
Anyway, as usual our life is full of interesting and challenging things. One of the nice things was a whistle stop visit by Trevor from Sydney who was down for work and popped over for an hour on Thursday evening, which was great and a lovely surprise. I had hoped to schedule a couple of other visits with Peter's friends this week but things have been pretty difficult for Peter and so I have not done so in the hope that he will pick up once the infection and the new drugs are under control. Fingers crossed!!
This week, it's a lower key time with the GP and major house cleaning on Wednesday, pall care nurse on Tuesday and Friday and hopefully my volunteer coming in on Tuesday afternoon. Last week I was able to catch the Charles Bayliss photographic exhibition at the National Library (fabulous images of Sydney, Melbourne etc from 1875 and so on) and a few of the other magnificent photographs of the Northern Territory and Arnhem Land (spectacular is the word) by Richard Green "Wild Places" which I understand from the book shop assistant will be coming out in a book at some stage.
This week I may well catch up on some of the other exhibitions in the Parliamentary Triangle if I can make it. As I can only get around 3 or 3 and 1/2 hours away, it means I can get about 2 hours with some interesting exhibits excluding travel time so that's worthwhile.
Anyway, enough of these ramblings. I am off to attempt an afternoon nap and think of spring which is arriving tomorrow.
Cheers - Leanne
Sunday, August 31, 2008
Sunday, August 24, 2008
Sunday 24th August 2008
As predicted last week was particularly hectic.
We had the OT visit on Monday to help us consider what might be useful in terms of grab rails in the bathrooms and toilets and the workman - who was a gem beyond price - came on Friday. After discussions with him and practical assessment of what was going to work and what might not with the actual pieces of hardware in hand, we had a grab rail installed in each shower cubicle, new hand held showers in each with 2 metre long articulated hoses for maximum flexibility and a small vertical grab rail at the toilet. All in all, with the workman's practical assistance, and forebearance with Peter's and my differences of opinion/recollection, that saved us over $400 and we were able to get rails in the almond colour that matches our tiles rather than ghastly stainless steel which always reminds me of hospitals and industrial applications. So that was a success.
We had the pall care nurse and GP visit on Tuesday; the CT scan was scheduled for Wednesday and that occurred reasonably smoothly and Friday we had the pall care nurse, grab rails and delivery of a delightfully named "throne accessory" from the plentiful and free supply from the Canberra Hospital's Equipment Loan Program. This I had to install, with some deft analysing of how the thing worked and manoeuvring of the toilet seat, screws etc out and then a couple of false starts and I got it in successfully. So now the main bathroom toilet has arm rests to assist all and sundry, but particularly Peter, to get off the toilet without having to be creative and perhaps have a potential fall.
Yesterday we also scheduled a visit from Kathleen and Dave who have been great supports over the past many months and with whom Peter has been keen to catch up, along with many others. They came here and the visit went very well. Peter really enjoyed their company and was very engaged but, as is to be expected, he was exhausted at the end of the day and was in pain.
As far as Peter's health goes this week the antibiotics did wonders for the lung infection and they finished on Wednesday. He had a great week, up watching the Olympics for several hours each day, doing his exercises and feeling pretty good and only disturbed once or twice during the nights . Then around Friday his condition started to show some signs of falling away again, especially over the weekend with more congestion/sputum and a very bad night last night - distressed and disturbed, up 5 times to the toilet, unable to breath, panicking and with escalating stress, fears and demands. So today he has not felt able to do any exercises, shower or engage in any way. I have commenced him on a medication the GP suggested which is to loosen the phlegm and help bring it up and while that seems to have started to kick in, like everything, it has its own side effects. So while we had the sweating under control last week, it has now commenced again as a side effect of the Bisolvin and, as usual, has a number of other effects which include breathlessness, nausea etc. I had been weaning Peter off unnecessary medications in the last couple of weeks, on medical advice so that recently he has been only on vitamins/minerals, ventolin, thyroid and arthritic medications (along with the pain medications of course). But now it looks as if we'll have to try to get on top of this chest thing again.
Anyway, today I spent almost all day in the bedroom with him and had a long nap this afternoon to try to catch up as if Peter is disturbed I am lucky to get 1 and 1/2 or 2 hours sleep in a row without disruption and last night's 4 or 5 disruptions meant I was feeling a little tetchy.
Hopefully tonight will be better and if not, then at least I have a small reserve from the nap this afternoon.
This week we have the appointment with the Oncologist, Dr Yip. Hopefully the CT scan and blood tests will be back and we will have some facts to go on in term of what's happening and how to proceed. The problem being Peter is always greatly distressed immediately before and after a visit to Dr Yip as the enormity of what is happening is laid out before us again and again. So I expect a few stressful days ahead for both of us.
Until next time. Salut - Leanne
We had the OT visit on Monday to help us consider what might be useful in terms of grab rails in the bathrooms and toilets and the workman - who was a gem beyond price - came on Friday. After discussions with him and practical assessment of what was going to work and what might not with the actual pieces of hardware in hand, we had a grab rail installed in each shower cubicle, new hand held showers in each with 2 metre long articulated hoses for maximum flexibility and a small vertical grab rail at the toilet. All in all, with the workman's practical assistance, and forebearance with Peter's and my differences of opinion/recollection, that saved us over $400 and we were able to get rails in the almond colour that matches our tiles rather than ghastly stainless steel which always reminds me of hospitals and industrial applications. So that was a success.
We had the pall care nurse and GP visit on Tuesday; the CT scan was scheduled for Wednesday and that occurred reasonably smoothly and Friday we had the pall care nurse, grab rails and delivery of a delightfully named "throne accessory" from the plentiful and free supply from the Canberra Hospital's Equipment Loan Program. This I had to install, with some deft analysing of how the thing worked and manoeuvring of the toilet seat, screws etc out and then a couple of false starts and I got it in successfully. So now the main bathroom toilet has arm rests to assist all and sundry, but particularly Peter, to get off the toilet without having to be creative and perhaps have a potential fall.
Yesterday we also scheduled a visit from Kathleen and Dave who have been great supports over the past many months and with whom Peter has been keen to catch up, along with many others. They came here and the visit went very well. Peter really enjoyed their company and was very engaged but, as is to be expected, he was exhausted at the end of the day and was in pain.
As far as Peter's health goes this week the antibiotics did wonders for the lung infection and they finished on Wednesday. He had a great week, up watching the Olympics for several hours each day, doing his exercises and feeling pretty good and only disturbed once or twice during the nights . Then around Friday his condition started to show some signs of falling away again, especially over the weekend with more congestion/sputum and a very bad night last night - distressed and disturbed, up 5 times to the toilet, unable to breath, panicking and with escalating stress, fears and demands. So today he has not felt able to do any exercises, shower or engage in any way. I have commenced him on a medication the GP suggested which is to loosen the phlegm and help bring it up and while that seems to have started to kick in, like everything, it has its own side effects. So while we had the sweating under control last week, it has now commenced again as a side effect of the Bisolvin and, as usual, has a number of other effects which include breathlessness, nausea etc. I had been weaning Peter off unnecessary medications in the last couple of weeks, on medical advice so that recently he has been only on vitamins/minerals, ventolin, thyroid and arthritic medications (along with the pain medications of course). But now it looks as if we'll have to try to get on top of this chest thing again.
Anyway, today I spent almost all day in the bedroom with him and had a long nap this afternoon to try to catch up as if Peter is disturbed I am lucky to get 1 and 1/2 or 2 hours sleep in a row without disruption and last night's 4 or 5 disruptions meant I was feeling a little tetchy.
Hopefully tonight will be better and if not, then at least I have a small reserve from the nap this afternoon.
This week we have the appointment with the Oncologist, Dr Yip. Hopefully the CT scan and blood tests will be back and we will have some facts to go on in term of what's happening and how to proceed. The problem being Peter is always greatly distressed immediately before and after a visit to Dr Yip as the enormity of what is happening is laid out before us again and again. So I expect a few stressful days ahead for both of us.
Until next time. Salut - Leanne
Sunday, August 17, 2008
Sunday 17 August 2008
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
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
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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