This week we have had further excitement. Finally the electrician arrived on Monday and now the bedroom is well wired for extra plug sockets so hopefully there will be no more tripping over the several extra powerboards and leads I needed previously.
Yesterday, Tuesday, we visited Dr Yip, oncologist for the 3 week follow-up visit after the radiation and he suggested that it might be worthwhile if Dr Thomson (gastroscopist) had a look down Peter's oesophagus to see what's happening there as Peter is unable to swallow anything at all now with all fluids and liquid food being administered by me through the peg tube. Dr Yip thinks Peter is looking much better compared to when he was in hospital earlier this month and wants to see him again in 1 month, prior to which he will have a CT scan and then decisions will be made about what might need to be done in the future on the chemotherapy front.
Peter was feeling reasonably good at the end of the appointment and agreed to go to the Woden Plaza to see about the medical bills with me. So it was his first outing in a busy shopping mall for several months and it went well apart from when he needed to go to the toilet and I, unthinkingly, wheeled him into the men's toilet (not having thought about or seen a disabled one) and caused Peter extreme embarrassment as I pushed him in and proceeded to help him up while a few startled men were at the urinal!!! I, of course, couldn't care less but I feel sure, in hindsight, that some of the men were a bit disconcerted! Anyway, Peter hurriedly told me to get him out and to go to the disabled toilet he had seen (the sign was at his eye level when he was seated in the wheelchair but not at mine so I had totally missed it). Poor Peter he was very embarrassed. but we got through that and finished the tasks I needed to do before going home without further incident.
He was exceptionally tired as a result of the activity and needed some extra pain relief and rest in the afternoon but has recovered now.
Anyway, after we got home we received a call from Dr Thomson's rooms to say that he had a spot in Dr Thomson's list for today at 12.45pm and otherwise there wasn't one for 6 weeks. So, while Peter was not keen to have to take it up today, we have done all the necessary preparations and will be heading off shortly. Unfortunately, I will miss out on a bit of time to go to the National Gallery, which we had been planning for the volunteer to come and sit with Peter for this afternoon, but we will try for that next week.
In the meantime, many thanks to all of you who keep thinking of us both locally in Australia and those overseas. Special hello to our overseas friends and relatives who have been in recent contact: Sylvia and Robbie Rex (South Carolina and Vermont); Andrew Garas and children, Kathy and Ed Brown in New York; Deb and Eugene in New Hampshire in the USA; Jan and Reggy in Holland; Kathy Wallwork in England; Imre Bokor and Bea in Europe; and many others (sorry if I haven't mentioned your name specifically this time around).
I have to go now as I need to drive Peter to the Calvary Hospital for the procedure, so will write more when I have something further to report.
Au revoir - Leanne
Peter Spiro in Canada; George Thompson in Texas;
Wednesday, July 30, 2008
Friday, July 25, 2008
Friday 28th July
As predicted we have had a busy week. The painters spent all of Monday here and got the job done with minimal disruption to Peter which was good. Naturally, the 2 days it took beforehand and the several days it is taking afterwards to get the house back into order is more exhausting for me than for Peter.
On Wednesday the GP visited and the blood results were available from the bloods taken on Tuesday. Peter's generally starting to pick up on many of the indicators now which is good. He is still low on a few things - eg. salt and his thyroid function is less than optimal so we have increased his Thyroxine to 75 micrograms and continue to pump him full of fibre, vitamins and his remianing couple of medications along with his fluids and feeds.
Yesterday we also went to see Dr Lyn Austen, radiation oncologist, for a follow-up consultation as it is 2 and 1/2 weeks since the end of the radiation. She was generally pleased with him - she stated he looks better and his strength and resistance when tested was pretty good despite Peter's concerns that he is weak and not feeling well. He has lost strength in his right arm and his motor movements are confirmed as being weak which Dr Austen confirmed could have been from the radiation as the area treated was in that range where it could affect his movement.
Peter was very concerned when she said that we need to keep an eye on how his movements are going as if the tumour moves into the spine he could become a paraplegic. Now this is Peter's 2nd most horrifying nightmare scenario, apart from choking/gasping for breath. So today he is very depressed. (This is not helped by the fact his pain has been breaking through the medication about an hour or so before the nurses arrive). It's very hard to face the thought of increasing decline in function to the point of total vulnerability and we both quake at the thought of what might lie ahead.
As he said to me this morning "I have spent my whole life trying to avoid this" (ie. cancer and physical decline). And isn't that the same for all, or at least most, of us? If we aren't having to face it within our family or friendship network, we live life with the hope that we will go in one fell swoop, without knowing a thing and it will be super quick. While in the meantime we live life as if we will always have health and independence. It's not until you go to the hospital (or work in one) that the vulnerability of the human condition faces you in every way possible. I know Peter always found hospitals hard places to be in and now that's the place or the system in which we spend a lot of time - a hard irony, that one!
Still waiting for the electrician to install the extra power points etc, but after that the house will feel more in order.
I am okay, just very tired this week. The pressure and disruption to get to a hospital appointment and manage all of the fluids and feeds is very tiring. Not helped by the fact that the car battery was flat when we went to go to the appointment and had to change to the other car to get to the appointment (but the NRMA mobile battery service did wonders when I called them later in the afternoon). However, we now have our disability pass so can park in disabled spots which is a very positive thing.
That's all for now. Salut - Leanne
On Wednesday the GP visited and the blood results were available from the bloods taken on Tuesday. Peter's generally starting to pick up on many of the indicators now which is good. He is still low on a few things - eg. salt and his thyroid function is less than optimal so we have increased his Thyroxine to 75 micrograms and continue to pump him full of fibre, vitamins and his remianing couple of medications along with his fluids and feeds.
Yesterday we also went to see Dr Lyn Austen, radiation oncologist, for a follow-up consultation as it is 2 and 1/2 weeks since the end of the radiation. She was generally pleased with him - she stated he looks better and his strength and resistance when tested was pretty good despite Peter's concerns that he is weak and not feeling well. He has lost strength in his right arm and his motor movements are confirmed as being weak which Dr Austen confirmed could have been from the radiation as the area treated was in that range where it could affect his movement.
Peter was very concerned when she said that we need to keep an eye on how his movements are going as if the tumour moves into the spine he could become a paraplegic. Now this is Peter's 2nd most horrifying nightmare scenario, apart from choking/gasping for breath. So today he is very depressed. (This is not helped by the fact his pain has been breaking through the medication about an hour or so before the nurses arrive). It's very hard to face the thought of increasing decline in function to the point of total vulnerability and we both quake at the thought of what might lie ahead.
As he said to me this morning "I have spent my whole life trying to avoid this" (ie. cancer and physical decline). And isn't that the same for all, or at least most, of us? If we aren't having to face it within our family or friendship network, we live life with the hope that we will go in one fell swoop, without knowing a thing and it will be super quick. While in the meantime we live life as if we will always have health and independence. It's not until you go to the hospital (or work in one) that the vulnerability of the human condition faces you in every way possible. I know Peter always found hospitals hard places to be in and now that's the place or the system in which we spend a lot of time - a hard irony, that one!
Still waiting for the electrician to install the extra power points etc, but after that the house will feel more in order.
I am okay, just very tired this week. The pressure and disruption to get to a hospital appointment and manage all of the fluids and feeds is very tiring. Not helped by the fact that the car battery was flat when we went to go to the appointment and had to change to the other car to get to the appointment (but the NRMA mobile battery service did wonders when I called them later in the afternoon). However, we now have our disability pass so can park in disabled spots which is a very positive thing.
That's all for now. Salut - Leanne
Sunday, July 20, 2008
Sunday 20th July 2008
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
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
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
Wednesday, July 09, 2008
Progress at home - Wednesday 9th July 08
Peter finished his radiotherapy yesterday morning and we are pleased that there are no further sessions to attend at the moment.
So we are starting to get into the routine of care again and are working out the best patterns for feeding etc. The dietitian agreed yesterday that we could increase the feeds to approximately 2 litres of Ensure Plus which provides about 2,800-3000 calories a day. On this regime Peter should be not only able to maintain his weight but hopefully increase. He has remained stable at 66. 7 kilos now for a week and my aim is to try to add a minimum of 10 to 15 kilos to get him back to what he was in early May, if the disease will let me. So I now start the pump feeds between 1 and 2 pm and they run through to 6 or 7am the next morning to deliver the 2 litres at between 100 and 125 mls an hour. My thoughts are that if we can increase his nutrition then he may feel a little better and his cognitive cloudiness will clear. Well, that's my theory anyway.
As you would expect in this situation Peter remains very depressed and sleeps or rests most of the time. The palliative care nurse feels pretty certain that the loss of function in the right arm and hand is nerve related and also we have noticed his voice is fading again - also most likely due to the nerve. We will hopefully see Dr Pacl again early next week for a comprehensive overview and also have appointments booked with the GP on Friday and the specialists (oncologists) for later in the month.
I couldn't believe tiny flakes of snow were falling for 1/4 hour at our place this morning at about 9.15am and the grey, overcast day, with low clouds over the hills in Tuggeranong. It reminded me of some of the European mountain villages Peter and I have visited in the past. It hasn't happened before (although some northern Canberra suburbs have had occasional snow showers over the past decade) since we moved here in 1995. Re the travel, as Peter says, "Thank goodness I didn't put off travel until I retired. How short-changed I would have felt!" Moral of the story, to reprise that famous saying - "Don't put off until tomorrow what you can (or want to) do today" and especially where travel is concerned.
Au revoir - Leanne
So we are starting to get into the routine of care again and are working out the best patterns for feeding etc. The dietitian agreed yesterday that we could increase the feeds to approximately 2 litres of Ensure Plus which provides about 2,800-3000 calories a day. On this regime Peter should be not only able to maintain his weight but hopefully increase. He has remained stable at 66. 7 kilos now for a week and my aim is to try to add a minimum of 10 to 15 kilos to get him back to what he was in early May, if the disease will let me. So I now start the pump feeds between 1 and 2 pm and they run through to 6 or 7am the next morning to deliver the 2 litres at between 100 and 125 mls an hour. My thoughts are that if we can increase his nutrition then he may feel a little better and his cognitive cloudiness will clear. Well, that's my theory anyway.
As you would expect in this situation Peter remains very depressed and sleeps or rests most of the time. The palliative care nurse feels pretty certain that the loss of function in the right arm and hand is nerve related and also we have noticed his voice is fading again - also most likely due to the nerve. We will hopefully see Dr Pacl again early next week for a comprehensive overview and also have appointments booked with the GP on Friday and the specialists (oncologists) for later in the month.
I couldn't believe tiny flakes of snow were falling for 1/4 hour at our place this morning at about 9.15am and the grey, overcast day, with low clouds over the hills in Tuggeranong. It reminded me of some of the European mountain villages Peter and I have visited in the past. It hasn't happened before (although some northern Canberra suburbs have had occasional snow showers over the past decade) since we moved here in 1995. Re the travel, as Peter says, "Thank goodness I didn't put off travel until I retired. How short-changed I would have felt!" Moral of the story, to reprise that famous saying - "Don't put off until tomorrow what you can (or want to) do today" and especially where travel is concerned.
Au revoir - Leanne
Saturday, July 05, 2008
Peter has been discharged from hospital - 5 July 08
After finally getting the necessary equipment to enable overnight feeding to be done at home, Peter was discharged from hospital on Friday 4 July. He has now been home about 28 hours and we are starting to get back into the routine of daily care.
The first 1/2 of the day is intensely busy- starting from about 7 or 7.30am and it is flat out until at least 10.15am - the overnight feeding tube has to be removed, flushed with water then 7 medications are given individually crushed and with plain water flushing in between; then comes the shower and dressing and another feed through a syringe at 10am. In between I fit in my breakfast and shower and then we are ready to face the day. The palliative care or community nurses attend at around 11.30 and on the days when all the dressings need to be changed they are often here for 1 to 1 and 1/2 hours. I have lunch, then another feed at 2.00pm with a 3 and 1/2 hour break until 5.30pm, when I get the next range of medications ready and then hook up the tube feeds at 6.00pm and then the next one at 10.00pm which runs through the night. So that's enough to get me into bed soon after the overnight feed tube is running. Then I wake to get Peter oxygen or the neubuliser if he needs it and to help him go to the toilet as the feed pole (like an IV drip pole) needs to be moved into the ensuite and I am concerned he may trip.
So far Peter has had 10 of his 12 radiotherapy treatments with the last 2 on Monday and Tuesday this coming week. After that the plan is that he will have bloods taken at the end of the week and be reviewed in 3 or 4 weeks by Dr Yip and Dr Austen, the 2 oncologists.
On Thursday evening, Peter asked Dr Yip what the plan was and how he would know if he was improving or how he would measure the progress to the outcome (whatever that might be) - always the "project manager". Dr Yip said that the aim of this treatment is to make Peter comfortable and to try to allow him to have more capacity to swallow, so the relative success is whether he can start to take soft foods at some future stage.
Peter also asked what the prognosis was - "Do I have 1 month, 5 months or 15 months?". Dr Yip said that he didn't know as Peter's tumours hadn't really behaved like others of this type and he hadn't thought he would necessarily last this long, but that it wouldn't be 15 months. This knocked us both for 6 all over again as we have constantly seen, over the 4 years, some small signs of improvement and he has come back from being this low before.
So we are both feeling very low. It's hard to hear that there is little hope of anything except making things as comfortable for Peter as possible. Peter has said to me today: "There's no way back from this and I am sorry." He is feeling like there's little hope now and yet he and I both desperately want a cure and for him to return to normal. While it's been important for us to know the reality, it's hard to hear it and do anything with it apart from feeling depressed and tearful once more in response to it.
Peter has been spending most of his time sleeping and is very physically weak so there really isn't much that he is able to do except lie in bed or sit in the recliner chair. The "quality of life" that the treatment will give him really relates to his swallowing and keeping the cancer at bay for a while - both of us are unsure whether he will be able to reclaim some semblance of independent functioning but I keep hoping.
Thanks for the emails, SMS messages and phone calls. For those of you wondering, the best times to call are between 8.30am and 8.30pm (Australian Eastern Standard Time). We had a nice call from Peter's cousin, Andrew, in New York this morning, which was really wonderful and very welcome, but receiving it at 4.50am was a bit difficult. If we are here I'll be happy to talk and if it's not a good time, I'll let you know and call back another time. I'll write again in the middle of the coming week and let you know how we are getting along. Cheers for now -
The first 1/2 of the day is intensely busy- starting from about 7 or 7.30am and it is flat out until at least 10.15am - the overnight feeding tube has to be removed, flushed with water then 7 medications are given individually crushed and with plain water flushing in between; then comes the shower and dressing and another feed through a syringe at 10am. In between I fit in my breakfast and shower and then we are ready to face the day. The palliative care or community nurses attend at around 11.30 and on the days when all the dressings need to be changed they are often here for 1 to 1 and 1/2 hours. I have lunch, then another feed at 2.00pm with a 3 and 1/2 hour break until 5.30pm, when I get the next range of medications ready and then hook up the tube feeds at 6.00pm and then the next one at 10.00pm which runs through the night. So that's enough to get me into bed soon after the overnight feed tube is running. Then I wake to get Peter oxygen or the neubuliser if he needs it and to help him go to the toilet as the feed pole (like an IV drip pole) needs to be moved into the ensuite and I am concerned he may trip.
So far Peter has had 10 of his 12 radiotherapy treatments with the last 2 on Monday and Tuesday this coming week. After that the plan is that he will have bloods taken at the end of the week and be reviewed in 3 or 4 weeks by Dr Yip and Dr Austen, the 2 oncologists.
On Thursday evening, Peter asked Dr Yip what the plan was and how he would know if he was improving or how he would measure the progress to the outcome (whatever that might be) - always the "project manager". Dr Yip said that the aim of this treatment is to make Peter comfortable and to try to allow him to have more capacity to swallow, so the relative success is whether he can start to take soft foods at some future stage.
Peter also asked what the prognosis was - "Do I have 1 month, 5 months or 15 months?". Dr Yip said that he didn't know as Peter's tumours hadn't really behaved like others of this type and he hadn't thought he would necessarily last this long, but that it wouldn't be 15 months. This knocked us both for 6 all over again as we have constantly seen, over the 4 years, some small signs of improvement and he has come back from being this low before.
So we are both feeling very low. It's hard to hear that there is little hope of anything except making things as comfortable for Peter as possible. Peter has said to me today: "There's no way back from this and I am sorry." He is feeling like there's little hope now and yet he and I both desperately want a cure and for him to return to normal. While it's been important for us to know the reality, it's hard to hear it and do anything with it apart from feeling depressed and tearful once more in response to it.
Peter has been spending most of his time sleeping and is very physically weak so there really isn't much that he is able to do except lie in bed or sit in the recliner chair. The "quality of life" that the treatment will give him really relates to his swallowing and keeping the cancer at bay for a while - both of us are unsure whether he will be able to reclaim some semblance of independent functioning but I keep hoping.
Thanks for the emails, SMS messages and phone calls. For those of you wondering, the best times to call are between 8.30am and 8.30pm (Australian Eastern Standard Time). We had a nice call from Peter's cousin, Andrew, in New York this morning, which was really wonderful and very welcome, but receiving it at 4.50am was a bit difficult. If we are here I'll be happy to talk and if it's not a good time, I'll let you know and call back another time. I'll write again in the middle of the coming week and let you know how we are getting along. Cheers for now -
Wednesday, July 02, 2008
Wednesday 2 July 2008
Peter is not yet home from hospital. The doctor and dietitian think he can come home but Peter is concerned that if he comes home he will not cope or I will not cope. So while I said "yes I can manage him at home" Peter said "no".
He had a fall on Saturday morning at 7.30am before I arrived for the day and that has shaken his confidence once more. Luckily he only sustained some bruising on his back at the lower ribs and the nursing staff heard the "thud" so came immediately to his assistance. But that means he now really wants someone to walk with him to the toilet etc to ensure he doesn't fall again. The reason for the fall, I understand from Peter, is his weakened and deconditioned state, which made him tottery on his legs and made him keel over.
Anyway, the peg tube feeds continue to go well although he has not gained any weight from them. So the dietitian has decided we can try to increase the overnight feed amount from 1 litre to 1.5 litres over a 12 hour period and review that. This increased regimen will commence when he comes home, which I think will be before the end of the week, as long as I can get all the equipment and supplies for the feeds at home.
The plan then is that he will not have any further treatment for the short term and in one month will see Dr Yip again for review, at which time blood tests will be considered. According to Dr Yip and others, the radiotherapy (which continues until 8 July) will take some weeks to months to finally work its way through and finish. At that time they are hoping it will have had a shrinking effect on the oesophageal tumour.
Generally, Peter is not in a good way psychologically at the moment as he cannot see any improvement and he says he is frustrated and I consider he is depressed. He has no interest in anything and is depressed that he is not able to eat or drink anything. He can actually swallow fluids but the problem is that every time he does so it means he brings up a lot of mucous and coughs which exhausts him (but is probably an important thing to do) and so he can't see the point in drinking to then have 5 minutes of exhausting coughing.
I am continuing to shower, clothe, feed, often administer the medication by the tube and attend his needs while he is in hospital. This makes him feel confident I will be able to manage at home and he can see that relatively speaking I am able to do a competent job, which is important. So I think we will manage reasonably well at home especially with the assistance of the palliative and community nurses to change his sterile dressings and pain medication.
Meanwhile I am fine and looking forward to having Peter home again as it is easier to be at home than at the hospital all day. Best wishes to you all. Cheers - Leanne
He had a fall on Saturday morning at 7.30am before I arrived for the day and that has shaken his confidence once more. Luckily he only sustained some bruising on his back at the lower ribs and the nursing staff heard the "thud" so came immediately to his assistance. But that means he now really wants someone to walk with him to the toilet etc to ensure he doesn't fall again. The reason for the fall, I understand from Peter, is his weakened and deconditioned state, which made him tottery on his legs and made him keel over.
Anyway, the peg tube feeds continue to go well although he has not gained any weight from them. So the dietitian has decided we can try to increase the overnight feed amount from 1 litre to 1.5 litres over a 12 hour period and review that. This increased regimen will commence when he comes home, which I think will be before the end of the week, as long as I can get all the equipment and supplies for the feeds at home.
The plan then is that he will not have any further treatment for the short term and in one month will see Dr Yip again for review, at which time blood tests will be considered. According to Dr Yip and others, the radiotherapy (which continues until 8 July) will take some weeks to months to finally work its way through and finish. At that time they are hoping it will have had a shrinking effect on the oesophageal tumour.
Generally, Peter is not in a good way psychologically at the moment as he cannot see any improvement and he says he is frustrated and I consider he is depressed. He has no interest in anything and is depressed that he is not able to eat or drink anything. He can actually swallow fluids but the problem is that every time he does so it means he brings up a lot of mucous and coughs which exhausts him (but is probably an important thing to do) and so he can't see the point in drinking to then have 5 minutes of exhausting coughing.
I am continuing to shower, clothe, feed, often administer the medication by the tube and attend his needs while he is in hospital. This makes him feel confident I will be able to manage at home and he can see that relatively speaking I am able to do a competent job, which is important. So I think we will manage reasonably well at home especially with the assistance of the palliative and community nurses to change his sterile dressings and pain medication.
Meanwhile I am fine and looking forward to having Peter home again as it is easier to be at home than at the hospital all day. Best wishes to you all. Cheers - Leanne
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