While the palliative care nurse is here replacing the syringe driver, I will write a few lines.
We have had a few quiet days following last week's frenzy which is good. Peter has spent most of the time sleeping but has also watched a couple of TV programs, which is a good sign. From tomorrow we will have the painters in to patch up some of the cracks that have appeared in the house during the drought and that will be a difficult day. I have put them off coming until 8.30am so I can have a bit of time to prepare for their arrival. Hopefully it will only take a day to do but I know it will be stressful for Peter.
On Wednesday I am expecting the electrician to come to install our extra power points to assist with all the extra equipment Peter needs and sensor lights; Thursday is an appointment to see Dr Austen, the radiation oncologist. So I don't expect we will have time to recuperate until Friday.
As for Peter, he has not gained any weight (in fact seems to have lost 30o grams but that could be due to the timing of the liquid food intake or bowel movements). He is starting to feel pain again now an hour or so before the nurses come, which we think may mean he is getting a bit used to the hydromorphone and may need a slightly greater dose for the same effect and that it is wearing off earlier. He has had a few disturbed nights when breaking out in sweat and feeling cold as a result so, I have had to buy in more flannelette pyjamas to back up the supply we had as he is going through 1 or 2 pairs a day now. I think I may have cleaned Canberra out of their supply as we have 8 pairs on the go now!
Breathing easily remains a problem and some days he is on the oxygen for almost 24 hours and others it is only a couple of hours. He only had it for a few hours yesterday but had to have it for the full day, the day before that.
I had the opportunity to have our lovely volunteer, Marg, come over for a few hours on Thursday, which allowed me the time to meet a friend for a quick Malaysian Laksa lunch and then get to the bank, medicare office, chemist and hardware store for some much needed supplies. It's good to know she will be available about once a week for that. I haven't yet had the opportunity to do anything more cultural or relaxing with the time but maybe that will come in the future. I can't really leave Peter before 1pm on any day as there is so much to be done, so afternoons work best for those minor excursions.
I am fine, apart from a fall in the house on wet floors on Wednesday. Only a jarred back and and a sore knee and hands. More concerning was that Peter tottered out to see what had happened, as I must have cried out, and then we were both limping back to the bedroom together, each more concerned about the other - which was quite funny in hindsight, but very worrying at the time! We are both very aware that we can't afford for anything adverse to happen to me or we are both well and truly "stuffed".
Meanwhile, my mother has reported that her radiotherapy treatment has been fine to date and she has not stopped cooking masses of cakes and pies, spring cleaning the house and generally working full on at all times. I really hope they get the remnants of this cancer and she recovers with no recurrence.
No other news to report so I will sign off. Au revoir - Leanne
Sunday, July 20, 2008
Thursday, July 17, 2008
Thursday 17 July 2008
We have had a busy few days since the last update.
Yesterday Dr Pacl visited as did our GP, along with the plumber (leaking taps finally had to be dealt with) and the electrician (we need more power points in the bedroom as Peter's equipment, along with the heater, electric blanket, side lamp and TV etc are creating a real OH&S issue for both of us with too many extension cords, power boards and so on creating a trip hazard, not to mention my concern about possible power overloads).
Anyway, taps are dealt with, power points will happen next week and also the painter/plasterer who is coming in to patch up the large cracks opening up in the house due to the drought and our gradual descent down the hill to the end of the cul-de-sac.
Dr Pacl spent considerable time with Peter yesterday and as he hasn't seen him since 19 June, when Peter was only on small amounts of liquid food supplement, he declared that he looked better than the last visit which he felt was as a result of the full amount of nutrition he has been able to take for the past 9 days. I also thanked him for the help in providing the oxygen concentrator and the home nebuliser as that has made a huge difference to Peter's level of comfort both physically and psychologically. Dr Pacl would like to remove the syringe driver but Peter is resistant as it has been the only medication that has really helped him to remove the pain in the past year or so. A compromise has been reached that we will move off the syringe driver over the next few weeks so that Peter has time to process that change and Dr Pacl would like to re-institute the skin patches. Peter's resistance to them is that they didn't work for him and Dr Pacl reassured him that the doses he was on were too low and now we know what works (ie. the hydromorphone) he can work out an equivalent patch dosage that should be effective as well as easier to apply. It would mean we wouldn't need the nurses to visit on a daily basis. But I think Peter feels a sense of comfort that they do come each day to help deal with the daily issues.
For example yesterday the peg feed tube blocked when I was giving the last of the morning medications. Usually if that happens I leave it for 1/2 hour and then give it another attempt. However, after 4 hours I couldn't unblock it. With the help of Joan in the Pall care team, I tried Coca Cola (which apparently is a whizz for unblocking all types of gastric tubes) but I couldn't get any of it in for it to do its work and trying to suck the blockage out didn't work. Anyway, after further consultation with some community nurse specialist and further instructions, Inge (Pall care nurse) was able to unscrew various parts of the tube and clear the blockage with a smaller sized syringe and bicarbonate of soda and water. So now it works smoothly but it was a worrying few hours as we would have had to go to the Emergency department of Canberra Hospital and possibly have had the tube removed and a new one replaced. This was something I definitely did not want to have to do unless totally necessary as I knew that it would not only exhaust and trumatise Peter but he would then not trust me to administer the medications again for fear of what might happen. So finally after the 4 hours all was well and the afternoon and night feeds have gone well.
Anyway, Dr Pacl also talked through some of Peter's fears that have been concerning him. One of which is about suffocating. Dr Pacl discussed with him why his situation is different, medically, to that of Peter's father and how he wouldn't have the same situation occur because his condition is different and things would manifest themselves differently. I thought he did it with great care and openness and that it gave Peter some food for thought as well, perhaps, as some comfort that the fear of suffocating may be only a fear and not the future.
Other news is that there is currently no infection at the Peg tube site, syringe driver is working well, Pic line is clean and okay and I think we have the bowel and bottom side of things under control. My cunning plan for the spenko (wool filled over-mattress) has worked and since Sunday afternoon I have had Peter using it and it is more comfortable. I have laid a big beach towel over it to act as insulation and absorption and a nice fluffy cotton flannelette sheet over the top. So I am using a combination of different sorts of blanket (cotton, mohair or wool quilt) and hot water bottles to get the temperature under control and it seems we have minimised the sweating as a result.
This morning Peter has announced that he will try to put on clothes (rather than pyjamas) and see if he can get up for a little while. This is as a result of Dr Pacl's positive intervention yesterday I think. We need to bottle this doctor as he is a rare and excellent person.
Peter also had 2 visits this week - one from a friend who came over from Perth. Unfortunately Peter was only able to spend about 10 minutes and a further 5 minutes with Stephen. But I know he was touched that he would come all this way to spend some time with Peter. Also a lovely visit from 2 other friends on Sunday afternoon. It may have done me more good than Peter to see both sets of people, but I think there were positive signs for Peter as well. So I am hopeful of introducing some other people back into seeing Peter (those without infections or illness of course as his bloods are still quite low after the chemotherapy etc) over the next week or so, even if only for 10 minutes or so.
Anyway, that's all for now. I will write when I have more news. Cheers - Leanne
Yesterday Dr Pacl visited as did our GP, along with the plumber (leaking taps finally had to be dealt with) and the electrician (we need more power points in the bedroom as Peter's equipment, along with the heater, electric blanket, side lamp and TV etc are creating a real OH&S issue for both of us with too many extension cords, power boards and so on creating a trip hazard, not to mention my concern about possible power overloads).
Anyway, taps are dealt with, power points will happen next week and also the painter/plasterer who is coming in to patch up the large cracks opening up in the house due to the drought and our gradual descent down the hill to the end of the cul-de-sac.
Dr Pacl spent considerable time with Peter yesterday and as he hasn't seen him since 19 June, when Peter was only on small amounts of liquid food supplement, he declared that he looked better than the last visit which he felt was as a result of the full amount of nutrition he has been able to take for the past 9 days. I also thanked him for the help in providing the oxygen concentrator and the home nebuliser as that has made a huge difference to Peter's level of comfort both physically and psychologically. Dr Pacl would like to remove the syringe driver but Peter is resistant as it has been the only medication that has really helped him to remove the pain in the past year or so. A compromise has been reached that we will move off the syringe driver over the next few weeks so that Peter has time to process that change and Dr Pacl would like to re-institute the skin patches. Peter's resistance to them is that they didn't work for him and Dr Pacl reassured him that the doses he was on were too low and now we know what works (ie. the hydromorphone) he can work out an equivalent patch dosage that should be effective as well as easier to apply. It would mean we wouldn't need the nurses to visit on a daily basis. But I think Peter feels a sense of comfort that they do come each day to help deal with the daily issues.
For example yesterday the peg feed tube blocked when I was giving the last of the morning medications. Usually if that happens I leave it for 1/2 hour and then give it another attempt. However, after 4 hours I couldn't unblock it. With the help of Joan in the Pall care team, I tried Coca Cola (which apparently is a whizz for unblocking all types of gastric tubes) but I couldn't get any of it in for it to do its work and trying to suck the blockage out didn't work. Anyway, after further consultation with some community nurse specialist and further instructions, Inge (Pall care nurse) was able to unscrew various parts of the tube and clear the blockage with a smaller sized syringe and bicarbonate of soda and water. So now it works smoothly but it was a worrying few hours as we would have had to go to the Emergency department of Canberra Hospital and possibly have had the tube removed and a new one replaced. This was something I definitely did not want to have to do unless totally necessary as I knew that it would not only exhaust and trumatise Peter but he would then not trust me to administer the medications again for fear of what might happen. So finally after the 4 hours all was well and the afternoon and night feeds have gone well.
Anyway, Dr Pacl also talked through some of Peter's fears that have been concerning him. One of which is about suffocating. Dr Pacl discussed with him why his situation is different, medically, to that of Peter's father and how he wouldn't have the same situation occur because his condition is different and things would manifest themselves differently. I thought he did it with great care and openness and that it gave Peter some food for thought as well, perhaps, as some comfort that the fear of suffocating may be only a fear and not the future.
Other news is that there is currently no infection at the Peg tube site, syringe driver is working well, Pic line is clean and okay and I think we have the bowel and bottom side of things under control. My cunning plan for the spenko (wool filled over-mattress) has worked and since Sunday afternoon I have had Peter using it and it is more comfortable. I have laid a big beach towel over it to act as insulation and absorption and a nice fluffy cotton flannelette sheet over the top. So I am using a combination of different sorts of blanket (cotton, mohair or wool quilt) and hot water bottles to get the temperature under control and it seems we have minimised the sweating as a result.
This morning Peter has announced that he will try to put on clothes (rather than pyjamas) and see if he can get up for a little while. This is as a result of Dr Pacl's positive intervention yesterday I think. We need to bottle this doctor as he is a rare and excellent person.
Peter also had 2 visits this week - one from a friend who came over from Perth. Unfortunately Peter was only able to spend about 10 minutes and a further 5 minutes with Stephen. But I know he was touched that he would come all this way to spend some time with Peter. Also a lovely visit from 2 other friends on Sunday afternoon. It may have done me more good than Peter to see both sets of people, but I think there were positive signs for Peter as well. So I am hopeful of introducing some other people back into seeing Peter (those without infections or illness of course as his bloods are still quite low after the chemotherapy etc) over the next week or so, even if only for 10 minutes or so.
Anyway, that's all for now. I will write when I have more news. Cheers - Leanne
Sunday, July 13, 2008
Sunday 13 July
Not a great deal to report since Wednesday - just lots of incremental physical/medical things.
We saw the GP on Friday and he wants to visit Peter at home on a weekly basis. Apparently he feels side-lined when Palliative care services and hospital doctors take over - a bit of a turf war it seems. However, part of me is a bit peeved about that, as Peter has consistently had to be the one to press the GP for referrals and other opinions over the past 4 years as he has missed almost everything of relevance since Peter's diagnosis in 2004 and there has been really nothing that I can think of in the way of proactive assistance.
Still it will be useful for us in the sense that if we need prescriptions etc we will be able to get them more readily and I won't have to cart Peter to the surgery, as he has said he will come to us. Now that does surprise me as they closed their Saturday morning clinic several years ago and I was surprised when I asked if they did home visits to be told they do. That's something we have never been offered and to be frank is something I didn't think they would offer, so didn't ask in the past. Another lesson learnt!
Anyway, Peter's blood test results showed he is still low in salt, protein and albumin (these latter two are due to the malnourishment and should pick up as the full feeds start to take effect). He is high in glucose and urea (the latter one due to not enough fluids, although he is getting almost 3 litres a day with the liquid feeds, so I just have to give him more water through the peg feed tube). As you would expect he is all over the place on the blood count variables - due to the chemo and radiotherapy and these are expected to readjust over the coming weeks.
We also had the community dietitian visit us on Thursday afternoon. Basically it was to go through Peter's history and check that I was comfortable with the regime, understood it and was able to have the initiative to modify things as circumstances arose. One good suggestion was the addition of a soluble fibre supplement, as well as the extra salt I already include, to the peg feeds or flushes, called Benefiber (yes, it is American and hence the different spelling). The minimum adult dose is 2 teaspoons, twice a day in 1/2 cup of fluid. I started yesterday with one dose and will add more today to get to the minimum and see how he is tolerating it. This will, hopefully, assist with bowel movements which have to be urged along with other medications if they are not forthcoming on a daily basis.
So, it is an interesting balancing act to get the right vitamins, minerals and other nutrient requirements into Peter at the moment. Just goes to show how much easier it is if you are able to eat and have a well balanced diet - the moment something goes out of alignment the knock-on effects can be very problematic (for example the seizures Peter had in hospital due to the low calcium levels).
We have had the okay to cease one drug, which helps with nausea and mood etc but can add to grogginess and foggy cognitive function and I can already notice a slight improvement in how Peter responds - just in 36 hours.
Battles still to be overcome/prevented apart from the above are: lungs and breathing (hopefully no further infection there and keeping airways clear); pressure areas (he is so thin that it is something of which I have to be aware); infection at the Peg site (we finished the antibiotics on Monday but there was a lot of yellow discharge there again yesterday) . We really have to keep that in tip top order as it is his only life line now for feeding.
I am hoping he will finally agree to me using the "spenko mattress" which we have on loan from the hospital - it is filled with wool and is a soft addition to put on top of your ordinary mattress. However, Peter hates the vinyl covering as he feels it contributes to his sweating, so I will have to devise a cunning plan to provide some absorbent layers on top, without deflating the loft of the mattress and hope that provides some assistance in the short term.)
Nothing else to report except we are both looking forward to Dr Pacl's visit on Tuesday for another review of pain medication etc. I'm not sure if I mentioned that Dr Pacl is going to keep Peter on as his community outpatient although he is moving to work in the hospitals from this month. This is a great thing for Peter and we are both really touched that he would keep us on (at the urging of one of our lovely Pall care nurses, I think).
I am fine and getting the routines under control. It certainly is a full time job - all hours of the day and night, but I can often get a couple of hours in the afternoon to read or catch up on sleep, emails etc which is positive.
For those of you asking about my mother. She started radiotherapy (30 or 35 treatments) on Tuesday at Nepean Hospital and these will go on for 6 or 7 weeks. I understand from my sister that it was an adenocarcinoma and there was only 0.5 millmetre from the tumour at one part of the site and they couldn't take any more from there. So I am concerned as this was exactly the same for Peter, (both the adenocarcinoma and the size of the buffer zone). I only hope this one can be treated more readily and responds well as I would hate for my poor mum to go through what Peter has had to deal with. Luckily, my exceptionally competent sister, Narelle, who is the scientist in the family, has been marvellous in being the advocate and transport for my parents and will continue to do so.
Anyway, that's all from me for now. Until next time - au revoir. Leanne
We saw the GP on Friday and he wants to visit Peter at home on a weekly basis. Apparently he feels side-lined when Palliative care services and hospital doctors take over - a bit of a turf war it seems. However, part of me is a bit peeved about that, as Peter has consistently had to be the one to press the GP for referrals and other opinions over the past 4 years as he has missed almost everything of relevance since Peter's diagnosis in 2004 and there has been really nothing that I can think of in the way of proactive assistance.
Still it will be useful for us in the sense that if we need prescriptions etc we will be able to get them more readily and I won't have to cart Peter to the surgery, as he has said he will come to us. Now that does surprise me as they closed their Saturday morning clinic several years ago and I was surprised when I asked if they did home visits to be told they do. That's something we have never been offered and to be frank is something I didn't think they would offer, so didn't ask in the past. Another lesson learnt!
Anyway, Peter's blood test results showed he is still low in salt, protein and albumin (these latter two are due to the malnourishment and should pick up as the full feeds start to take effect). He is high in glucose and urea (the latter one due to not enough fluids, although he is getting almost 3 litres a day with the liquid feeds, so I just have to give him more water through the peg feed tube). As you would expect he is all over the place on the blood count variables - due to the chemo and radiotherapy and these are expected to readjust over the coming weeks.
We also had the community dietitian visit us on Thursday afternoon. Basically it was to go through Peter's history and check that I was comfortable with the regime, understood it and was able to have the initiative to modify things as circumstances arose. One good suggestion was the addition of a soluble fibre supplement, as well as the extra salt I already include, to the peg feeds or flushes, called Benefiber (yes, it is American and hence the different spelling). The minimum adult dose is 2 teaspoons, twice a day in 1/2 cup of fluid. I started yesterday with one dose and will add more today to get to the minimum and see how he is tolerating it. This will, hopefully, assist with bowel movements which have to be urged along with other medications if they are not forthcoming on a daily basis.
So, it is an interesting balancing act to get the right vitamins, minerals and other nutrient requirements into Peter at the moment. Just goes to show how much easier it is if you are able to eat and have a well balanced diet - the moment something goes out of alignment the knock-on effects can be very problematic (for example the seizures Peter had in hospital due to the low calcium levels).
We have had the okay to cease one drug, which helps with nausea and mood etc but can add to grogginess and foggy cognitive function and I can already notice a slight improvement in how Peter responds - just in 36 hours.
Battles still to be overcome/prevented apart from the above are: lungs and breathing (hopefully no further infection there and keeping airways clear); pressure areas (he is so thin that it is something of which I have to be aware); infection at the Peg site (we finished the antibiotics on Monday but there was a lot of yellow discharge there again yesterday) . We really have to keep that in tip top order as it is his only life line now for feeding.
I am hoping he will finally agree to me using the "spenko mattress" which we have on loan from the hospital - it is filled with wool and is a soft addition to put on top of your ordinary mattress. However, Peter hates the vinyl covering as he feels it contributes to his sweating, so I will have to devise a cunning plan to provide some absorbent layers on top, without deflating the loft of the mattress and hope that provides some assistance in the short term.)
Nothing else to report except we are both looking forward to Dr Pacl's visit on Tuesday for another review of pain medication etc. I'm not sure if I mentioned that Dr Pacl is going to keep Peter on as his community outpatient although he is moving to work in the hospitals from this month. This is a great thing for Peter and we are both really touched that he would keep us on (at the urging of one of our lovely Pall care nurses, I think).
I am fine and getting the routines under control. It certainly is a full time job - all hours of the day and night, but I can often get a couple of hours in the afternoon to read or catch up on sleep, emails etc which is positive.
For those of you asking about my mother. She started radiotherapy (30 or 35 treatments) on Tuesday at Nepean Hospital and these will go on for 6 or 7 weeks. I understand from my sister that it was an adenocarcinoma and there was only 0.5 millmetre from the tumour at one part of the site and they couldn't take any more from there. So I am concerned as this was exactly the same for Peter, (both the adenocarcinoma and the size of the buffer zone). I only hope this one can be treated more readily and responds well as I would hate for my poor mum to go through what Peter has had to deal with. Luckily, my exceptionally competent sister, Narelle, who is the scientist in the family, has been marvellous in being the advocate and transport for my parents and will continue to do so.
Anyway, that's all from me for now. Until next time - au revoir. Leanne
Subscribe to:
Posts (Atom)
