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
Wednesday, July 09, 2008
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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