Peter has remained in hospital all this week and while the doctor is aiming for his discharge on Monday I am not so sure it will be then. Peter has continued with the Cisplatin and 5FU chemotherapy this week for 5 days through a pump into his Pic line in his arm and he has also commenced radiotherapy and had 5 of the 12 sessions to date. While he has not been as nauseated this time as he was from the last bout of chemotherapy he said yesterday he feel flat and low and is thinking he can't go on. I think that within a week or two some of the nausea and depression may well lift a little as he begins to eliminate the toxins from his system. He currently has a low sodium level and so the IV drip has had to come off and salt added to his tube feeds to try to rectify that. He also has an infection at the Peg tube site and so is now on antibiotics too. The human body is so complex that everything is linked to everything else and one thing out of synch leads to so many other issues.
We have successfully commenced overnight feeding through the Peg tube into his duodenum with a pump and he is now having the 1 litre infused overnight with 2 smaller feeds through the tube during the day. So with that nutrition going in now on a regular basis I think Peter will start to look a little better and start to feel a bit better gradually as well.
I have been at the hospital showering, dressing and administering the extra feeds as well as keeping an eye on the dressing changes and medications as there is a bit of laxness from time to time and things don't get done when you necessarily want them done. I also learnt to do the overnight feeds through the pump so I can do them when he comes home. We are being loaned a special pump to do the feeds and I was keen to use it under nursing supervision before being at home wondering what goes where etc.
This week I managed to take a quick drive up to Sydney to see my mother who has just had a tumour removed from her salivary gland and will now undertake 30 sessions of radiotherapy. I hadn't seen her for more than 6 weeks and so I was glad that Peter was in hospital so I could take the quick trip and be back within 24 hours. Luckily I have an excellently competent sister who is accompanying mum and dad to the specialists etc, in between work and family.
So as for next week, I am hopeful we will see some gradual decreasing of the impacts of the chemotherapy, while the radiotherapy is still continuing. After that, I am unsure as I am not sure how many cycles of the chemotherapy Dr Yip considers appropriate. So I will wait to hear about that next week.
Until then, take care everyone and remember - don't smoke, eat plenty of fruit and vegetables and don't get fat!!! Cheers - Leanne
Saturday, June 28, 2008
Monday, June 23, 2008
Monday 23 June 2008
A hugely busy and tiring day today. Up early and after 2 hours and 45 minutes of feeding Peter and myself, showering Peter and myself, organising a 2nd feed and medications, loading up the car and packing his hospital bag with medications etc we got to the hospital. I know that those of you who have had babies know all about this and so it is not new but it is new for us to have to have one of us do everything for the other.
Anyway, Peter spent up to 3.30pm today getting his next round of chemotherapy, Peg tube wound attended to along with bloods taken etc before being admitted to the National Capital Private Hospital and then having a consultation with the dietitian, another with the registrar, being wheeled across to the Canberra Hospital for radiotherapy at 5pm and then having to be hooked up to drips, have meds injected through the Peg and have a 1 litre bottle of Ensure ("complete food") hooked up for a 12 hour "feed" through the tube. So at 8pm I decided all was well for the night and headed home.
As per the previous blog entries, Pete is scheduled to be in for around 5 days and then will come home and I will need to take him into radiotherapy for another 2 weeks after that. So far he has regained a little cheer at the fact the dietitian has agreed to try him out on higher amounts of tube feeding. I have to say both Peter and I were keen to see if more was possible as he has been loosing condition faster than a speeding bullet and over the past 2 days I have had to help shower him again as he can stand but not do anything much to contribute to the exercise and of course I have to towel him dry and dress him.
I am very hopeful he can cope with the increased feeds and it doesn't put too much adverse pressure on his system as he is now eating nothing - with only an occasional apple juice or broth.
Anyway, stay tuned for the next episode. I can say that on past performance, by tomorrow afternoon or Wednesday morning he will probably be feeling appalling from the effects of the chemotherapy. At least he doesn't have to try to cope with swallowing anything or eating now if the tube feeding works out.
Au revoir - Leanne.
Anyway, Peter spent up to 3.30pm today getting his next round of chemotherapy, Peg tube wound attended to along with bloods taken etc before being admitted to the National Capital Private Hospital and then having a consultation with the dietitian, another with the registrar, being wheeled across to the Canberra Hospital for radiotherapy at 5pm and then having to be hooked up to drips, have meds injected through the Peg and have a 1 litre bottle of Ensure ("complete food") hooked up for a 12 hour "feed" through the tube. So at 8pm I decided all was well for the night and headed home.
As per the previous blog entries, Pete is scheduled to be in for around 5 days and then will come home and I will need to take him into radiotherapy for another 2 weeks after that. So far he has regained a little cheer at the fact the dietitian has agreed to try him out on higher amounts of tube feeding. I have to say both Peter and I were keen to see if more was possible as he has been loosing condition faster than a speeding bullet and over the past 2 days I have had to help shower him again as he can stand but not do anything much to contribute to the exercise and of course I have to towel him dry and dress him.
I am very hopeful he can cope with the increased feeds and it doesn't put too much adverse pressure on his system as he is now eating nothing - with only an occasional apple juice or broth.
Anyway, stay tuned for the next episode. I can say that on past performance, by tomorrow afternoon or Wednesday morning he will probably be feeling appalling from the effects of the chemotherapy. At least he doesn't have to try to cope with swallowing anything or eating now if the tube feeding works out.
Au revoir - Leanne.
Saturday, June 21, 2008
Saturday 21 June 2008
Saturday 21 June 2008
I am having a go at writing a few lines of my own again to this blog. It is not that I I am unappreciative of the work that Leanne is putting in the opposite in fact. By staring at a screen of data and then trying to emulate the erudite and witty contents I realise how much effort this now requires what with muscles that I actually tried to look up the other day doing a translation from a text book and a mirror image of what I was seeing. It is truly frightening when the differences are in seeing more puny musculature in the mirror image and NOT the text book.
I have not dared to step onto a set of scales but would not be surprised if the weight is down to the 50 -55 kilo range. For those of you who have known me - think abut it - that was usually the size of the conference papers an then there were the working papers and clothes PLUS the bulk of the attendee.
I notice that Leanne waxes lyrical abut those attending to to our needs here at home and I have to say I am empathic to this. However let us not forget those who work at the hospital directly and actually have the permissions to make the visits there as well. These doctors share rounds and patients and are equally dazzling and legendary a fact that they will have to prove again I suspect when the places into which subcut needles can be placed with which a syringe driver can be used. What IS truly amazing is what takes place in the home - I mean seriously folks whatever your fantasies about a former public servant it should not extend to the notion that without attending work there is an income stream available to pay for incurred bills for treattment. Medical supplies are not cheap. Take a few of the 'essentials Leanne has referred to:
a walker,
a wheel chair,
an oxyen concentrator,
a shower chair,
a high back motorized chair to get you into and out of positions of comfort;
wedge for the bed to emulate a hosptial elecrtonic bed;
the real thing if you need one,
pic line;
peg tube;
Injector;
not to mention the costs of visits for the personnel to use all this stuff stuff professionally in your own home and of course their costs (transport etc) as well as medication
If you want to horrify yourself check out prices and costs at Weston creek at the Independent Living Centre - don;t bother with the smalls just check the bigger ticket items only
Then ask your self how ANYONE can afford all this?
The reality is different your Doctor's fees and the medications are a little like death and taxes, there to be paid - and if you have been clever enough to DIRGREGARD the propaganda and take out private health insurance cover when you were in receipt of an income you're laughing now as bills are turned over to them and magic happens - they get paid by the insurance company and you are no worse off.
Explore then the unreal world of leasing the equipment as distinct from BUYING it. The costs will surprise you. They completely left me high and dry with admiration. THEN when you contemplate the overall service and its connectivity if will leave you with a sense of resolve to preserve all that you find intact as you have found it (minimalist position) or ADD value where you can find some (eg donations of your own) or Opimal value position where (assuming you get the chance) you volunteer YOUR TIME to the cause.
Not many things bring grown men to cry but these services up there with the better motivators.
I am having a go at writing a few lines of my own again to this blog. It is not that I I am unappreciative of the work that Leanne is putting in the opposite in fact. By staring at a screen of data and then trying to emulate the erudite and witty contents I realise how much effort this now requires what with muscles that I actually tried to look up the other day doing a translation from a text book and a mirror image of what I was seeing. It is truly frightening when the differences are in seeing more puny musculature in the mirror image and NOT the text book.
I have not dared to step onto a set of scales but would not be surprised if the weight is down to the 50 -55 kilo range. For those of you who have known me - think abut it - that was usually the size of the conference papers an then there were the working papers and clothes PLUS the bulk of the attendee.
I notice that Leanne waxes lyrical abut those attending to to our needs here at home and I have to say I am empathic to this. However let us not forget those who work at the hospital directly and actually have the permissions to make the visits there as well. These doctors share rounds and patients and are equally dazzling and legendary a fact that they will have to prove again I suspect when the places into which subcut needles can be placed with which a syringe driver can be used. What IS truly amazing is what takes place in the home - I mean seriously folks whatever your fantasies about a former public servant it should not extend to the notion that without attending work there is an income stream available to pay for incurred bills for treattment. Medical supplies are not cheap. Take a few of the 'essentials Leanne has referred to:
a walker,
a wheel chair,
an oxyen concentrator,
a shower chair,
a high back motorized chair to get you into and out of positions of comfort;
wedge for the bed to emulate a hosptial elecrtonic bed;
the real thing if you need one,
pic line;
peg tube;
Injector;
not to mention the costs of visits for the personnel to use all this stuff stuff professionally in your own home and of course their costs (transport etc) as well as medication
If you want to horrify yourself check out prices and costs at Weston creek at the Independent Living Centre - don;t bother with the smalls just check the bigger ticket items only
Then ask your self how ANYONE can afford all this?
The reality is different your Doctor's fees and the medications are a little like death and taxes, there to be paid - and if you have been clever enough to DIRGREGARD the propaganda and take out private health insurance cover when you were in receipt of an income you're laughing now as bills are turned over to them and magic happens - they get paid by the insurance company and you are no worse off.
Explore then the unreal world of leasing the equipment as distinct from BUYING it. The costs will surprise you. They completely left me high and dry with admiration. THEN when you contemplate the overall service and its connectivity if will leave you with a sense of resolve to preserve all that you find intact as you have found it (minimalist position) or ADD value where you can find some (eg donations of your own) or Opimal value position where (assuming you get the chance) you volunteer YOUR TIME to the cause.
Not many things bring grown men to cry but these services up there with the better motivators.
Friday, June 20, 2008
Friday Evening 20 June 2008
Well the house has been like Pitt Street over the past few days - more visitors than ever before and all due to the helpfulness and resources of the Palliative Home Based Community Care team.
We have had visits from the OT, the pain specialist Dr Pacl (again this man is a legend - so professional yet so caring and engaged with Peter) and the palliative and community nurses (Joan and Colleen in particular are very good with all of Peter's treatments) ; also as a result of Dr Pacl's visit we have had an oxygen concentrator machine delivered to help Peter get some oxygen when needed, a nebuliser to assist in loosening up the bronchial area, and some extra medications to assist. The house is being slowly transformed into a quasi-clinic with all the equipment as the dining room and spare room are filled with aids, equipment and medications. We have also had the first delivery of 48 tins of complete nutritional food preparation "Ensure+"
I've also had contact with a volunteer who will come to sit with Peter for 4 hours per week and we will probably start this once he comes home from hospital in a week or so. As well as that a massage therapist has been in contact and again we will see how he is on release from hospital before booking this service. These are all free and courtesy of the Palliative Care team and the ACT government. How amazing is that!! What a wonderful service - it's truly fabulous and we are both very overwhelmed.
As far as the success of the syringe feeding and the Peg tube - Peter had 2 very painful and uncomfortable nights from the site of the surgery for the Peg tube and we had one less than successful feeding situation which was as a result of the water I used from the tap to flush his tube being too cold. The dietitian said to use tap water and I did but clearly tap water at 5pm in Canberra in winter is not the optimal temperature to inject straight into the duodenum so Peter had a very uncomfortable couple of hours where he broke out into cold sweats and was in cramped pain. I felt terrible and so thought it could only be 1 of 2 things - either the speed with which I had injected the fluid or the temperature of the water and given that the discomfort started immediately following the water flush and I wasn't really rushing it, I realised it had to be the temperature. So I administered a hotwater bottle and after an hour or so it settled down but it is not a good feeling to know that you have, however inadvertently, caused the pain and discomfort of a loved one. So now I zap everything in the microwave for 10 or 20 seconds depending on volume and that makes it tepid or lukewarm which has meant no further problems.
We are still on a mingy 2 cans a day of the fluid (1/3 of the normal dietary requirement) but the dietitian has explained that to give more until the blood tests are taken next week and he is checked for his toleration of the formula, would be unwise to try to increase the intake as the body in starvation mode breaks down and utilises fats and muscle and to increase intake could be detrimental to stopping that breakdown. So it's slow and frustrating as each day Peter is drinking and eating less and so is losing more and more condition. Today, he was very weak in the shower and I had to help him whereas he was improving before the Peg tube but finding it difficult to swallow food and drink. Now the Peg tube is inserted and takes the pressure of the eating and drinking but he is losing strength as he is not able to increase his nutritional intake. I worry that he may starve to death before we get back to the right nutritional intake.
So that's it for now. Peter has to be admitted to the National Capital Private Hospital on Monday for chemotherapy and radiotherapy at Canberra Hospital. I know both of us are not looking forward to that given the toxicity of the chemicals and how totally sick they make him, but we continue to look for the ray of hope that will mean we have been able to "buy" another few months.
Cheers for now - Leanne
We have had visits from the OT, the pain specialist Dr Pacl (again this man is a legend - so professional yet so caring and engaged with Peter) and the palliative and community nurses (Joan and Colleen in particular are very good with all of Peter's treatments) ; also as a result of Dr Pacl's visit we have had an oxygen concentrator machine delivered to help Peter get some oxygen when needed, a nebuliser to assist in loosening up the bronchial area, and some extra medications to assist. The house is being slowly transformed into a quasi-clinic with all the equipment as the dining room and spare room are filled with aids, equipment and medications. We have also had the first delivery of 48 tins of complete nutritional food preparation "Ensure+"
I've also had contact with a volunteer who will come to sit with Peter for 4 hours per week and we will probably start this once he comes home from hospital in a week or so. As well as that a massage therapist has been in contact and again we will see how he is on release from hospital before booking this service. These are all free and courtesy of the Palliative Care team and the ACT government. How amazing is that!! What a wonderful service - it's truly fabulous and we are both very overwhelmed.
As far as the success of the syringe feeding and the Peg tube - Peter had 2 very painful and uncomfortable nights from the site of the surgery for the Peg tube and we had one less than successful feeding situation which was as a result of the water I used from the tap to flush his tube being too cold. The dietitian said to use tap water and I did but clearly tap water at 5pm in Canberra in winter is not the optimal temperature to inject straight into the duodenum so Peter had a very uncomfortable couple of hours where he broke out into cold sweats and was in cramped pain. I felt terrible and so thought it could only be 1 of 2 things - either the speed with which I had injected the fluid or the temperature of the water and given that the discomfort started immediately following the water flush and I wasn't really rushing it, I realised it had to be the temperature. So I administered a hotwater bottle and after an hour or so it settled down but it is not a good feeling to know that you have, however inadvertently, caused the pain and discomfort of a loved one. So now I zap everything in the microwave for 10 or 20 seconds depending on volume and that makes it tepid or lukewarm which has meant no further problems.
We are still on a mingy 2 cans a day of the fluid (1/3 of the normal dietary requirement) but the dietitian has explained that to give more until the blood tests are taken next week and he is checked for his toleration of the formula, would be unwise to try to increase the intake as the body in starvation mode breaks down and utilises fats and muscle and to increase intake could be detrimental to stopping that breakdown. So it's slow and frustrating as each day Peter is drinking and eating less and so is losing more and more condition. Today, he was very weak in the shower and I had to help him whereas he was improving before the Peg tube but finding it difficult to swallow food and drink. Now the Peg tube is inserted and takes the pressure of the eating and drinking but he is losing strength as he is not able to increase his nutritional intake. I worry that he may starve to death before we get back to the right nutritional intake.
So that's it for now. Peter has to be admitted to the National Capital Private Hospital on Monday for chemotherapy and radiotherapy at Canberra Hospital. I know both of us are not looking forward to that given the toxicity of the chemicals and how totally sick they make him, but we continue to look for the ray of hope that will mean we have been able to "buy" another few months.
Cheers for now - Leanne
Tuesday, June 17, 2008
Tuesday 17 June 2008
We have had an exhausting couple of days. Peter had the Peg tube inserted into his duodenum yesterday and that took most of the day. He had a disturbed night last night with acute pain at the site of the Peg tube but he was able to settle down and sleep following a hot water bottle and change of position in bed.
Today he visited the oncologist who was concerned about his level of hydration and so he was administered with 1 litre of intravenous fluid with potassium as his levels were low. While we were there we were able to see the dietitian who showed me how to feed Peter through the tube using a large 60 millilitre syringe and using ready prepared tins of complete nutritional liquids. So we practiced under supervision of the dietitian and I have been able to give him the 3rd of 4 daily feeds so far today with one more to go in an hour or so. We are starting off on 2 cans a day which will be about 700 calories and nutrients and will gradually increase to 6 cans a day which will be about 2,200 calories - an amount which is enough to stabilise him and maintain his current weight but will not add weight. Not sure what we do about adding weight but Peter has been encouraged to continue to try to eat and drink when he wants to so that will be additional input. Anyway, the dietitian was really good and helpful and we feel confident of better outcomes now on that front, in due course.
The other good news about the Peg tube is that I can also crush most of his medicines and then add them to water and inject through the tube so he doesn't have the problem of choking on the pills and doesn't have the issue with bitter tastes or the inability to swallow fluid when trying to take the drugs. So we are both feeling a glimmer of some hope that in a few weeks, we will have the nutrition side of things a little more under control.
This will be equally important as he recommences chemotherapy next Monday and will also have 12 sessions of radiotherapy over three weeks (up to and including 8 July). So he will be re-admitted to hospital for at least the 5 days of the combined treatment as the chemo staff think he will be too fragile to be at home for that period and I know he will be very sick as a result of all those toxins in his system. So the less issues we have with both medications and food the better off he'll be.
So for the rest of the week now we will just have the community palliative care nurse visits and an Occupational Therapist who is coming on Thursday to discuss what, if anything, Peter can do to compensate for the weakness in his right arm and hand, which we think is because of the tumour.
As for me - okay, busy and a bit tired but glad to have Peter at home, despite the daily challenges and issues.
As Peter would say: Salut until next time!
Today he visited the oncologist who was concerned about his level of hydration and so he was administered with 1 litre of intravenous fluid with potassium as his levels were low. While we were there we were able to see the dietitian who showed me how to feed Peter through the tube using a large 60 millilitre syringe and using ready prepared tins of complete nutritional liquids. So we practiced under supervision of the dietitian and I have been able to give him the 3rd of 4 daily feeds so far today with one more to go in an hour or so. We are starting off on 2 cans a day which will be about 700 calories and nutrients and will gradually increase to 6 cans a day which will be about 2,200 calories - an amount which is enough to stabilise him and maintain his current weight but will not add weight. Not sure what we do about adding weight but Peter has been encouraged to continue to try to eat and drink when he wants to so that will be additional input. Anyway, the dietitian was really good and helpful and we feel confident of better outcomes now on that front, in due course.
The other good news about the Peg tube is that I can also crush most of his medicines and then add them to water and inject through the tube so he doesn't have the problem of choking on the pills and doesn't have the issue with bitter tastes or the inability to swallow fluid when trying to take the drugs. So we are both feeling a glimmer of some hope that in a few weeks, we will have the nutrition side of things a little more under control.
This will be equally important as he recommences chemotherapy next Monday and will also have 12 sessions of radiotherapy over three weeks (up to and including 8 July). So he will be re-admitted to hospital for at least the 5 days of the combined treatment as the chemo staff think he will be too fragile to be at home for that period and I know he will be very sick as a result of all those toxins in his system. So the less issues we have with both medications and food the better off he'll be.
So for the rest of the week now we will just have the community palliative care nurse visits and an Occupational Therapist who is coming on Thursday to discuss what, if anything, Peter can do to compensate for the weakness in his right arm and hand, which we think is because of the tumour.
As for me - okay, busy and a bit tired but glad to have Peter at home, despite the daily challenges and issues.
As Peter would say: Salut until next time!
Sunday, June 15, 2008
Sunday 15 June 2008
The forthcoming week is going to be a busy one for Peter and I as he is starting radiotherapy and will have treatments on all days except Wednesday. This will last until 2 July.
He is also scheduled for the peg tube to be inserted to allow him to have supplemental feeding through the tube at 11.45am on Monday. As he is not an inpatient we have to organise an urgent dietitian appointment in order to have the appropriate supplements available and organised so the community/palliative care nurses can show me how to do all of that. At least then the pressure will be reduced for me to try to cajole Peter into having things to eat. I am presuming, until told otherwise, that he will still be allowed to eat but that this will bring his base-line nutrition back to normal and allow him to re-gain some or all of the weight he has lost, without the pressure to try to swallow things.
I also understand his medication can be put through the tube which will also take the pressure off him trying to get oral medication down - it's amazing how many medications and supplements presume everyone has a throat the size of a horse and can swallow large tablets or capsules. When things are available in soluble form (such as the calcium supplements he has needed since the seizures) they often come in bijou sized containers with 10 soluble tablets and priced at a higher level, compared to 60 horse tablets at a lower level. (I presume the medications will need to be crushed and mixed with the mixture - no doubt these and other mysteries will be made clear to me in due course)
As well over this next few weeks, we have the daily visits from the nurses to try to work around as the appointments for the radiotherapy are varied each day.
The chemotherapy I suspect will now commence the following week as the peg tube can't be done while the chemo is underway due to lowered levels of infection fighting cells and risk of infection at the site. However, it was at our insistence that the peg tube be inserted as Peter is just not able to take in an average amount of daily calories and nutrition to allow him to claw back some of the weight loss. I was worried that a further 3 - 4 weeks, or more, of not eating whatsoever would see him deteriorate even more as on Friday he weighed in at 65 kilos - a very low weight for him and a loss of 10 kilos in 4 weeks.
In his quite overweight days immediately prior to the original diagnosis in 2004 he was about 110 kilos - far too much for his frame and the result of a sedentary lifestyle, love of food and grazing at night. When I could get him to agree to go on a diet with me in the past he would complain like crazy but would then successfully lose 15 kilos or more. Usually in the lead up to a trip overseas we would diet from Boxing Day to the day we stepped on the plane to go o/s in the April of the following year - this combined with extra exercise meant we were well placed for the rigours of travel with me (walking lots and seeing lots) and Peter (sitting in cafes lots and sampling local foods lots). Anyway, now it all seems so odd that he once had to be encouraged to lose weight and now I have to encourage him to eat.
So we are having a quiet weekend ahead of the flurry of activity over the next couple of weeks.
Last night Peter told me he felt like he was living in some surreal dream and that things were out of control and he wanted to wake up (presumably back into his old like where he was healthy and in control). That must be a truly terrifying feeling - no wonder he battles every single thing, no doubt in an effort to re-assert himself. Naturally, I try to get him involved in all decisions, from food, his daily routine to the medical issues - which I know, in good times, he always wants but at others he has recently said "I don't know, I can't think, I'm not able to decide". How difficult that must be to progress from a seriously rational, logical and information-hungry state to one where it is all too much to contemplate. I understand from Dr Pacl that the Hydro-morphine may affect cognitive abilities and so the medium to long term plan is to move away from the syringe driver to something else. However, hopefully that something else will also be good at controlling the pain - which this certainly has been.
Thanks to everyone following the blog and those of you who have emailed or phoned - it's good to know you are thinking of Peter and us. Will write again in a few days.
He is also scheduled for the peg tube to be inserted to allow him to have supplemental feeding through the tube at 11.45am on Monday. As he is not an inpatient we have to organise an urgent dietitian appointment in order to have the appropriate supplements available and organised so the community/palliative care nurses can show me how to do all of that. At least then the pressure will be reduced for me to try to cajole Peter into having things to eat. I am presuming, until told otherwise, that he will still be allowed to eat but that this will bring his base-line nutrition back to normal and allow him to re-gain some or all of the weight he has lost, without the pressure to try to swallow things.
I also understand his medication can be put through the tube which will also take the pressure off him trying to get oral medication down - it's amazing how many medications and supplements presume everyone has a throat the size of a horse and can swallow large tablets or capsules. When things are available in soluble form (such as the calcium supplements he has needed since the seizures) they often come in bijou sized containers with 10 soluble tablets and priced at a higher level, compared to 60 horse tablets at a lower level. (I presume the medications will need to be crushed and mixed with the mixture - no doubt these and other mysteries will be made clear to me in due course)
As well over this next few weeks, we have the daily visits from the nurses to try to work around as the appointments for the radiotherapy are varied each day.
The chemotherapy I suspect will now commence the following week as the peg tube can't be done while the chemo is underway due to lowered levels of infection fighting cells and risk of infection at the site. However, it was at our insistence that the peg tube be inserted as Peter is just not able to take in an average amount of daily calories and nutrition to allow him to claw back some of the weight loss. I was worried that a further 3 - 4 weeks, or more, of not eating whatsoever would see him deteriorate even more as on Friday he weighed in at 65 kilos - a very low weight for him and a loss of 10 kilos in 4 weeks.
In his quite overweight days immediately prior to the original diagnosis in 2004 he was about 110 kilos - far too much for his frame and the result of a sedentary lifestyle, love of food and grazing at night. When I could get him to agree to go on a diet with me in the past he would complain like crazy but would then successfully lose 15 kilos or more. Usually in the lead up to a trip overseas we would diet from Boxing Day to the day we stepped on the plane to go o/s in the April of the following year - this combined with extra exercise meant we were well placed for the rigours of travel with me (walking lots and seeing lots) and Peter (sitting in cafes lots and sampling local foods lots). Anyway, now it all seems so odd that he once had to be encouraged to lose weight and now I have to encourage him to eat.
So we are having a quiet weekend ahead of the flurry of activity over the next couple of weeks.
Last night Peter told me he felt like he was living in some surreal dream and that things were out of control and he wanted to wake up (presumably back into his old like where he was healthy and in control). That must be a truly terrifying feeling - no wonder he battles every single thing, no doubt in an effort to re-assert himself. Naturally, I try to get him involved in all decisions, from food, his daily routine to the medical issues - which I know, in good times, he always wants but at others he has recently said "I don't know, I can't think, I'm not able to decide". How difficult that must be to progress from a seriously rational, logical and information-hungry state to one where it is all too much to contemplate. I understand from Dr Pacl that the Hydro-morphine may affect cognitive abilities and so the medium to long term plan is to move away from the syringe driver to something else. However, hopefully that something else will also be good at controlling the pain - which this certainly has been.
Thanks to everyone following the blog and those of you who have emailed or phoned - it's good to know you are thinking of Peter and us. Will write again in a few days.
Friday, June 13, 2008
Friday 13th June 08
The past few days have shown some glimmers of hope with Peter's calories gradually improving by a small amount each day. However, not enough to start reversing the weight loss problem and build energy. Yesterday was not a good day from a calorific point of view as he back-slid by about 200 or 300 calories and he can't afford to do so.
We had an excellent home visit from Dr Pacl who is a pain specialist at Clare Holland House, the palliative care hospice, with whom Peter has the best relationship of any of the doctors. I can't emphasise enough what a kind and caring person he is and how he spends a lot of time on the holistic issues Peter is going through - really the only person to have done that comprehensively in the time that Peter has been ill . All the other specialists focus on their speciality and the GP is not much chop, whereas Dr Pacl works through all the issues Peter has and gives thorough medical reasons and information for what is happening for Peter - which you will know is exactly what Peter needs - data and information on which he can ruminate and which helps him understand what is happening and what to expect. Dr Pacl also focuses in on Peter's state of mind and emotions which is an important aspect. I know Peter cannot speak highly enough of Dr Pacl - this from a man who has never trusted or sought out a doctor and would have rather had hot bamboo slapped on the soles of his feet rather than trust or seek assistance from one!
Both Peter and I have agreed with Dr Pacl that it might be best if he has a "peg" tube inserted into his gastrointestinal tract (not sure where) to feed him especially over the next couple of weeks or soon thereafter as next Monday he has to commence 12 sessions of radiotherapy (up to and including 2 July) and also chemotherapy for the same period. So Dr Pacl will follow this up with the other doctors - Drs Yip (oncologist) and Thomson (gastroscopist).
I don't know how I am going to get him to the radiotherapy every day as he is likely, on past experience, to get sicker and more nauseated from the chemotherapy. It's something I dread having to do as it is like taking your loved one in for daily torture, not counting the problems of getting a sick person, with no energy and as thin as a rake into the car and home again knowing that he is loathing every single second and may refuse at any time to continue.
As for how he is right now he said: " I find it difficult to formulate a thought, difficult to speak and difficult to do almost anything these days" when I asked him whether there was anything he wanted to let people know via the blog. But I know he is very pleased and grateful for the amazing help and daily visits from the palliative and community care nurses and for the thoughts and messages from people around the work with whom he has a relationship.
We also had the delivery of the electric lift recliner chair yesterday and he spent about an hour in it. It is in the family room next to the kitchen so it is at the hub of things in our house. So I think we are now as fully equipped as we can be apart from the offer of a hospital bed if we need it.
We are off this morning to have bloods taken ahead of next week's chemotherapy, so until next time... take care of yourselves and thanks for your messages and thoughts.
We had an excellent home visit from Dr Pacl who is a pain specialist at Clare Holland House, the palliative care hospice, with whom Peter has the best relationship of any of the doctors. I can't emphasise enough what a kind and caring person he is and how he spends a lot of time on the holistic issues Peter is going through - really the only person to have done that comprehensively in the time that Peter has been ill . All the other specialists focus on their speciality and the GP is not much chop, whereas Dr Pacl works through all the issues Peter has and gives thorough medical reasons and information for what is happening for Peter - which you will know is exactly what Peter needs - data and information on which he can ruminate and which helps him understand what is happening and what to expect. Dr Pacl also focuses in on Peter's state of mind and emotions which is an important aspect. I know Peter cannot speak highly enough of Dr Pacl - this from a man who has never trusted or sought out a doctor and would have rather had hot bamboo slapped on the soles of his feet rather than trust or seek assistance from one!
Both Peter and I have agreed with Dr Pacl that it might be best if he has a "peg" tube inserted into his gastrointestinal tract (not sure where) to feed him especially over the next couple of weeks or soon thereafter as next Monday he has to commence 12 sessions of radiotherapy (up to and including 2 July) and also chemotherapy for the same period. So Dr Pacl will follow this up with the other doctors - Drs Yip (oncologist) and Thomson (gastroscopist).
I don't know how I am going to get him to the radiotherapy every day as he is likely, on past experience, to get sicker and more nauseated from the chemotherapy. It's something I dread having to do as it is like taking your loved one in for daily torture, not counting the problems of getting a sick person, with no energy and as thin as a rake into the car and home again knowing that he is loathing every single second and may refuse at any time to continue.
As for how he is right now he said: " I find it difficult to formulate a thought, difficult to speak and difficult to do almost anything these days" when I asked him whether there was anything he wanted to let people know via the blog. But I know he is very pleased and grateful for the amazing help and daily visits from the palliative and community care nurses and for the thoughts and messages from people around the work with whom he has a relationship.
We also had the delivery of the electric lift recliner chair yesterday and he spent about an hour in it. It is in the family room next to the kitchen so it is at the hub of things in our house. So I think we are now as fully equipped as we can be apart from the offer of a hospital bed if we need it.
We are off this morning to have bloods taken ahead of next week's chemotherapy, so until next time... take care of yourselves and thanks for your messages and thoughts.
Tuesday, June 10, 2008
Tuesday 10 June 2008
Apologies for the delay in the updates.
Peter has been home for 3 and 1/2 days now and each day has been a real challenge in terms of trying to increase his calorie content from almost nothing (300 calories on Friday) and also fluid intake of at least 1.2 litres a day. So far we have been able to increase it by about 100 calories a day from Saturday when he was more settled( around 750 calories) to yesterday which was just a touch over 1000 calories. As someone who has had to watch all those "empty" calories since my teens, it is, once again, a creative challenge to get something inside Peter. So apple juice and home made chicken broth constitute the primary fluids with the broth having the addition of a few tablespoons of a product called Carb + which is a carbohydrate powder which dissolves in fluids but for each 10 grams (about a tablespoon) there is 38 calories and it makes Peter feel like he has eaten a scoop of mashed potato.
The food is a challenge. It is somewhat different from 2004 when he was having chemo and also had pneumonia. This time it is the chemotherapy and a right lung infection. Back in 2004 everything he ate tasted terrible due to the effect on the taste buds and severe nausea. This time it has been the same but with the addition of the stricture in the oesophagus meaning that everything has to be of the right texture and consistency, with a little taste but not too much and with meaningful calories but not too rich. He can't taste salt properly at the moment and while we have held the mouth ulcers at bay at the moment, the food has to take into account sensitive oral issues.
So on Sunday I baked some honey glazed pears and an egg custard - both pronounced not to his taste (the lemon juice in the pears was too astringent and the custard too eggy). Yesterday was not a bad day though as he ate some commercial chocolate custard which is something he calls "Vlah" - apparently this kind of dessert was often served on the ship when he was emigrating in 1957 and it is something he will eat - with a total of 154 calories per small container I am embracing anything. So along with the custard, he also had a creme caramel, a cup of chicken broth with Carb + and I used some veal tortellini and made a mild carbonara sauce of which he ate 10 pieces. That with a glass of milk and the apple juice was it for the day - around 1000 calories at the very most but absolutely better than he was eating in the hospital.
I wake each morning wondering what I will be able to make to tempt him to try something. The problem being any rejected items end up being what I eat and I certainly do not need any carbohydrate or other calorific enhancements!
Peter spends most of his day asleep in bed with the electric blanket on 3. He is so painfully thin he has no insulation and wants to have the house heated to a point where I am almost expiring when I undertake normal activity. Luckily we have the rumpus room which is not heated to which I can escape for some coolness and work on the computer (tax return being uppermost in my mind at the moment). On Sunday and Monday he took the roller-walker for a walk to the end of the cul de sac (about 50 metres) and that exhausted him, but was good to get internal organs working etc. On Sunday night he also decided to shave as he hadn't done so for a while and to my surprise he shaved off his moustache and left just a goatee - I was so shocked as I have never seen him without his moustache and with the much thinner face I didn't recognise him. I am not sure who this thin, clean shaven man with large brown eyes is now!
While the pain is now controlled really well with the hydro morphine in the syringe driver, the side effects of that is constipation so that is a battle as well and can cause a great deal of agony when there has been no movement for over a week.
Peter has spent a couple of minutes on the computer today but his interest is limited. His right arm is now without a lot of power and fine movements are difficult. The oncologist, Dr Yip, thinks this could be because of the tumour affecting the right arm.
He remains very frustrated about not being able to get better, depressed about the re-occurrence of the cancer and its move to the bone (I think it is T11 near the right collar bone) and has said that he doesn't think he will survive this bout. On the other hand he is hopeful that if he can stand the treatment he might be able to regain 50 or 60% of his previous functionality. It depends on the day and what has happened.
In the meantime thank goodness we live in the ACT with the daily palliative and community care nurse visits and the opportunity for24 hour phone support as well as being so close to everything here. I often wonder how we would have gone if we had stayed in the apartment at Bondi Beach.There everything is difficult to get to, there were the stairs and while the weather is much milder, the flat faced south and was, in the end, quite noisy, compared to the house here which is north and east facing. So the main bedroom gets good sun from about 11am to 4.30pm in winter and apart from cracker nights, it's very tranquil.
This week, we will be taking collection of a more comfortable recliner chair and a wheelchair. Again courtesy of the equipment loans scheme. I am unsure whether we will use the wheelchair but perhaps it might be useful if he wants me to take him out for an outing or a walk around the little lake near the house. I doubt whether either of those will happen this week.
Next week he is meant to commence radiotherapy (10 days over 2 weeks) and chemotherapy. I don't know how I am going to encourage him to go especially when he is feeling so bad. Still I am a great believer in the power of lightly poached eggs and chicken broth, so I live in hope he will agree to go.
Salut until next time.
Peter has been home for 3 and 1/2 days now and each day has been a real challenge in terms of trying to increase his calorie content from almost nothing (300 calories on Friday) and also fluid intake of at least 1.2 litres a day. So far we have been able to increase it by about 100 calories a day from Saturday when he was more settled( around 750 calories) to yesterday which was just a touch over 1000 calories. As someone who has had to watch all those "empty" calories since my teens, it is, once again, a creative challenge to get something inside Peter. So apple juice and home made chicken broth constitute the primary fluids with the broth having the addition of a few tablespoons of a product called Carb + which is a carbohydrate powder which dissolves in fluids but for each 10 grams (about a tablespoon) there is 38 calories and it makes Peter feel like he has eaten a scoop of mashed potato.
The food is a challenge. It is somewhat different from 2004 when he was having chemo and also had pneumonia. This time it is the chemotherapy and a right lung infection. Back in 2004 everything he ate tasted terrible due to the effect on the taste buds and severe nausea. This time it has been the same but with the addition of the stricture in the oesophagus meaning that everything has to be of the right texture and consistency, with a little taste but not too much and with meaningful calories but not too rich. He can't taste salt properly at the moment and while we have held the mouth ulcers at bay at the moment, the food has to take into account sensitive oral issues.
So on Sunday I baked some honey glazed pears and an egg custard - both pronounced not to his taste (the lemon juice in the pears was too astringent and the custard too eggy). Yesterday was not a bad day though as he ate some commercial chocolate custard which is something he calls "Vlah" - apparently this kind of dessert was often served on the ship when he was emigrating in 1957 and it is something he will eat - with a total of 154 calories per small container I am embracing anything. So along with the custard, he also had a creme caramel, a cup of chicken broth with Carb + and I used some veal tortellini and made a mild carbonara sauce of which he ate 10 pieces. That with a glass of milk and the apple juice was it for the day - around 1000 calories at the very most but absolutely better than he was eating in the hospital.
I wake each morning wondering what I will be able to make to tempt him to try something. The problem being any rejected items end up being what I eat and I certainly do not need any carbohydrate or other calorific enhancements!
Peter spends most of his day asleep in bed with the electric blanket on 3. He is so painfully thin he has no insulation and wants to have the house heated to a point where I am almost expiring when I undertake normal activity. Luckily we have the rumpus room which is not heated to which I can escape for some coolness and work on the computer (tax return being uppermost in my mind at the moment). On Sunday and Monday he took the roller-walker for a walk to the end of the cul de sac (about 50 metres) and that exhausted him, but was good to get internal organs working etc. On Sunday night he also decided to shave as he hadn't done so for a while and to my surprise he shaved off his moustache and left just a goatee - I was so shocked as I have never seen him without his moustache and with the much thinner face I didn't recognise him. I am not sure who this thin, clean shaven man with large brown eyes is now!
While the pain is now controlled really well with the hydro morphine in the syringe driver, the side effects of that is constipation so that is a battle as well and can cause a great deal of agony when there has been no movement for over a week.
Peter has spent a couple of minutes on the computer today but his interest is limited. His right arm is now without a lot of power and fine movements are difficult. The oncologist, Dr Yip, thinks this could be because of the tumour affecting the right arm.
He remains very frustrated about not being able to get better, depressed about the re-occurrence of the cancer and its move to the bone (I think it is T11 near the right collar bone) and has said that he doesn't think he will survive this bout. On the other hand he is hopeful that if he can stand the treatment he might be able to regain 50 or 60% of his previous functionality. It depends on the day and what has happened.
In the meantime thank goodness we live in the ACT with the daily palliative and community care nurse visits and the opportunity for24 hour phone support as well as being so close to everything here. I often wonder how we would have gone if we had stayed in the apartment at Bondi Beach.There everything is difficult to get to, there were the stairs and while the weather is much milder, the flat faced south and was, in the end, quite noisy, compared to the house here which is north and east facing. So the main bedroom gets good sun from about 11am to 4.30pm in winter and apart from cracker nights, it's very tranquil.
This week, we will be taking collection of a more comfortable recliner chair and a wheelchair. Again courtesy of the equipment loans scheme. I am unsure whether we will use the wheelchair but perhaps it might be useful if he wants me to take him out for an outing or a walk around the little lake near the house. I doubt whether either of those will happen this week.
Next week he is meant to commence radiotherapy (10 days over 2 weeks) and chemotherapy. I don't know how I am going to encourage him to go especially when he is feeling so bad. Still I am a great believer in the power of lightly poached eggs and chicken broth, so I live in hope he will agree to go.
Salut until next time.
Friday, June 06, 2008
Peter has been discharged from hospital
At 11.30am today Peter was discharged from hospital. He was ambivalent about it as he was worried about how he would cope at home as he said he was barely coping in hospital. Anyway, we had the red hatchback filled to the roof with a shower chair, roller-walker, wool bed overlay and foam "bed wedge" as we headed home - all on loan from the hospital equipment centre which is free. We are having an electric recliner chair and wheelchair delivered next Thursday - again free on loan - and have the offer of an electric hospital bed if he wants one.
Shortly afterwards, the palliative care community nurse came and spent a couple of hours taking Peter's history and setting up the medications he will have to have. They will come in daily around noon to change his syringe-driver which delivers the hydro-morphine pain relief. So that will be good. His pain is now under control with the combination of the hydro-morphine and another pill (Mobic).
Unfortunately he is still painfully thin and is eating very little. I have carbohyrdrate and protein powder to add to things but it will take some time for him to improve I think. But I know he will enjoy the peace and quiet at home as the lady in the next room at the hospital had a constant stream of about 6 visitors all the time who were quite noisy.
He has spent the afternoon in bed but got up to eat a bowl of chicken broth (with carbohydrate powder) and is back there again now. The challenge will be to not only get him to eat each day but to take the medications he requires each day as he is prone to refusing or adjusting some of the things that he should be taking.
I will write again in a few days.
Shortly afterwards, the palliative care community nurse came and spent a couple of hours taking Peter's history and setting up the medications he will have to have. They will come in daily around noon to change his syringe-driver which delivers the hydro-morphine pain relief. So that will be good. His pain is now under control with the combination of the hydro-morphine and another pill (Mobic).
Unfortunately he is still painfully thin and is eating very little. I have carbohyrdrate and protein powder to add to things but it will take some time for him to improve I think. But I know he will enjoy the peace and quiet at home as the lady in the next room at the hospital had a constant stream of about 6 visitors all the time who were quite noisy.
He has spent the afternoon in bed but got up to eat a bowl of chicken broth (with carbohydrate powder) and is back there again now. The challenge will be to not only get him to eat each day but to take the medications he requires each day as he is prone to refusing or adjusting some of the things that he should be taking.
I will write again in a few days.
Wednesday, June 04, 2008
Wednesday 4th June
Peter is still feeling awful and remains in hospital. The doctor was aiming to get him home today but that isn't going to happen as he has not been doing much except sleeping but needs to drink about 1 and 1/2 litres a day and eat.
He has started to eat tiny amounts with some complaint about the hospital food (small bowl of chicken broth declared to be "tasteless", 1/4 of a vegetable lasagne which didn't rate a comment but just a look of disdain when asked about it). This excellent progress is due to the cajoling of the stand-in oncologist who has taken him in hand while Dr Yip is on a week's leave and she has done a good job with him. I have offered to bring food in again for him but he says it is too strong for him at the moment (i.e all the usual tastes he enjoys are too much for him).
A physiotherapist has given him exercises and a walking frame to assist him around the ward a few times a day and a device to blow into to assist him with the right lung function to assist in removing the remains of the phlegm from the infection.
He looks like one of the dark, thin, pale men in many Goya paintings now. He clearly has little or no energy and the plan to commence radiotherapy next week looks like it will have to be postponed for a week as he is clearly not up to another battering so quickly after the chemotherapy left him so very nauseated and weakened.
I will update again on the weekend.
He has started to eat tiny amounts with some complaint about the hospital food (small bowl of chicken broth declared to be "tasteless", 1/4 of a vegetable lasagne which didn't rate a comment but just a look of disdain when asked about it). This excellent progress is due to the cajoling of the stand-in oncologist who has taken him in hand while Dr Yip is on a week's leave and she has done a good job with him. I have offered to bring food in again for him but he says it is too strong for him at the moment (i.e all the usual tastes he enjoys are too much for him).
A physiotherapist has given him exercises and a walking frame to assist him around the ward a few times a day and a device to blow into to assist him with the right lung function to assist in removing the remains of the phlegm from the infection.
He looks like one of the dark, thin, pale men in many Goya paintings now. He clearly has little or no energy and the plan to commence radiotherapy next week looks like it will have to be postponed for a week as he is clearly not up to another battering so quickly after the chemotherapy left him so very nauseated and weakened.
I will update again on the weekend.
Sunday, June 01, 2008
Sunday 1 June 2008
Well, the first day of winter dawned grey and cool here today. I thought I would give another update as the last one was so concerning and I know many of you will be following Peter's progress closely.
Since the seizures on Friday night, Peter has had a very quiet and subdued 2 days. The oncologist thinks the seizures were due to low blood calcium levels, so he is receiving an IV with calcium to increase the levels. Apparently anything above a "2" reading is not too bad but his were around 1.6. So he is still being kept in bed with the bed rails up (a bit like closing the gate after the horse has bolted) as he is very weak.
The brain scan taken on Friday night shows no abnormalities (thank god) that is, no tumours or abnormal activity; no skull fracture etc either which is all positive. You've always known he was "hard-headed" and now you know that medical science has revealed the truth!!
He finished this cycle of chemotherapy yesterday afternoon and is on an IV which is helping to flush his system with fluids and get rid of the chemo drugs. He still feels very ill but the oncologist was very good with him today and told him that to get him home by mid week, he would have to do some very hard work, namely drinking around 1.5 litres and starting to eat, getting out of bed and walking a little.
As a result he had his first food for 4 and 1/2 days tonight - 1 small spoon of macaroni, 1 small piece of banana and 1/3 bowl of chocolate mousse. All of which is positive. So now at least he won't think it's just me "nagging" at him to eat, he has the doctor telling him as well!!
As for his injuries as a result of the "swan dive" to the floor, the left side of his face, especially the forehead, is all swollen and grazed; his temple is grazed and he has a horizontal graze from the corner of his mouth about 10 cm long.
It seems the pain is also now under better control as Peter has asked for his "mobic" tablet to be included in his regimen (it's a non-steroidal antinflammatory drug). The pain specialist has indicated Peter has will be able to receive home assistance from the "palliative care" team in the community and we should also be able to access home aids, such as shower chairs, bed components (soft wool overlays or hospital bed) and recliner chairs with special water filled cushions (although some may require a wait). This is good news as I was looking to buy a new bed and chair etc and this is one less thing to have to do, although Peter had already sent me out to investigate all of this earlier in the week.
As for me, I am okay if somewhat tired and staving off a bit of a cold that I don't want to pass onto Peter or have it develop further.
Thanks to everyone for all your positive thoughts and messages. I'll post another update in a few days or when there is a change in Peter's condition.
Since the seizures on Friday night, Peter has had a very quiet and subdued 2 days. The oncologist thinks the seizures were due to low blood calcium levels, so he is receiving an IV with calcium to increase the levels. Apparently anything above a "2" reading is not too bad but his were around 1.6. So he is still being kept in bed with the bed rails up (a bit like closing the gate after the horse has bolted) as he is very weak.
The brain scan taken on Friday night shows no abnormalities (thank god) that is, no tumours or abnormal activity; no skull fracture etc either which is all positive. You've always known he was "hard-headed" and now you know that medical science has revealed the truth!!
He finished this cycle of chemotherapy yesterday afternoon and is on an IV which is helping to flush his system with fluids and get rid of the chemo drugs. He still feels very ill but the oncologist was very good with him today and told him that to get him home by mid week, he would have to do some very hard work, namely drinking around 1.5 litres and starting to eat, getting out of bed and walking a little.
As a result he had his first food for 4 and 1/2 days tonight - 1 small spoon of macaroni, 1 small piece of banana and 1/3 bowl of chocolate mousse. All of which is positive. So now at least he won't think it's just me "nagging" at him to eat, he has the doctor telling him as well!!
As for his injuries as a result of the "swan dive" to the floor, the left side of his face, especially the forehead, is all swollen and grazed; his temple is grazed and he has a horizontal graze from the corner of his mouth about 10 cm long.
It seems the pain is also now under better control as Peter has asked for his "mobic" tablet to be included in his regimen (it's a non-steroidal antinflammatory drug). The pain specialist has indicated Peter has will be able to receive home assistance from the "palliative care" team in the community and we should also be able to access home aids, such as shower chairs, bed components (soft wool overlays or hospital bed) and recliner chairs with special water filled cushions (although some may require a wait). This is good news as I was looking to buy a new bed and chair etc and this is one less thing to have to do, although Peter had already sent me out to investigate all of this earlier in the week.
As for me, I am okay if somewhat tired and staving off a bit of a cold that I don't want to pass onto Peter or have it develop further.
Thanks to everyone for all your positive thoughts and messages. I'll post another update in a few days or when there is a change in Peter's condition.
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