Sat. April 30
Saturday, April 30, 2011
The past few days have been rough for Marty. While it seems like the radiation has worked in that he no longer has pain in his right shoulder/arm, he's been having severe pain in his sacral area/groin/thighs which has been flaring up unpredictably and has required him to take a lot of pain medication especially in the last 24 hours. It was a rough night last night and he is trying to rest now. I spoke with his doctor this morning and we are doing what we can to make him more comfortable, in raising the dose of his long-acting pain medications. Hopefully that will get things under control again so Marty can get outside and enjoy some sun.
Reminder re: visiting Martin
Wednesday, April 27, 2011
Hi, just a reminder to please make contact with either Martin, his parents or Oni before coming to visit. If you've left a message, please wait to hear back from them before coming.
Martin likes having visitors, but says he's feeling the need for scheduled visits only.
Also, please limit your visits to an hour or so and be prepared to just sit with him and not necessarily have a conversation as he's not always feeling up to it.
Thanks,
Carolyn
Martin likes having visitors, but says he's feeling the need for scheduled visits only.
Also, please limit your visits to an hour or so and be prepared to just sit with him and not necessarily have a conversation as he's not always feeling up to it.
Thanks,
Carolyn
Monday April 25
Monday, April 25, 2011
Just a quick note before I head back to Vancouver.
Things seem to be going pretty well here so far. After spending nearly 3 weeks in the hospital, Marty is finding it's taking some time to transition back into life at home. The first couple nights were a bit rough with some unsettled dreams and up quite a bit. Last night M had a good sleep. Yesterday his energy level was higher than during his hospital stay and he is moving around his apartment quite a bit after spending most of his time in bed while in hospital.
What seems to be the most difficult right now is getting used to being on a lot of medications that make him drowsy, and how to schedule them to maximize his awake and alert time for meals and activities. It's a learning process and we're working it out day by day.
Last night we had Easter/Passover with Amy, Oni and Tuula. Matzo ball soup made by Amy and chicken stew made by Anne with a yummy dessert and chocolate eggs.
Today Amy and Tuula will spend the day with Marty.
We'd like to encourage everyone to use the Lotsa Helping Hands website ("Marty's Healing Team"). If you're not already signed up for it, please do. If you're planning to come visit, it has a calendar that you can mark which days you're planning to be here. However please communicate with Martin/his parents/Oni before showing up. Marty appreciates your visits!
I'll be back in Pemberton later this week.
Things seem to be going pretty well here so far. After spending nearly 3 weeks in the hospital, Marty is finding it's taking some time to transition back into life at home. The first couple nights were a bit rough with some unsettled dreams and up quite a bit. Last night M had a good sleep. Yesterday his energy level was higher than during his hospital stay and he is moving around his apartment quite a bit after spending most of his time in bed while in hospital.
What seems to be the most difficult right now is getting used to being on a lot of medications that make him drowsy, and how to schedule them to maximize his awake and alert time for meals and activities. It's a learning process and we're working it out day by day.
Last night we had Easter/Passover with Amy, Oni and Tuula. Matzo ball soup made by Amy and chicken stew made by Anne with a yummy dessert and chocolate eggs.
Today Amy and Tuula will spend the day with Marty.
We'd like to encourage everyone to use the Lotsa Helping Hands website ("Marty's Healing Team"). If you're not already signed up for it, please do. If you're planning to come visit, it has a calendar that you can mark which days you're planning to be here. However please communicate with Martin/his parents/Oni before showing up. Marty appreciates your visits!
I'll be back in Pemberton later this week.
Home sweet home.
Saturday, April 23, 2011
Martin is happy to be back home in Pemberton. We arrived yesterday afternoon. The ride back from North Van in Oni's truck went really well and M was able to doze in the back seat and did not have any pain. He was very happy to reunite with his own space and had a nap on the couch as soon as we arrived. It was also good to have a home-cooked meal again last night cooked by Anne.
The night was a bit rough unfortunately as Marty did not get much sleep. It seems being back home might take a bit of time to get used to again. M's throat is sore from the radiation treatments (now they are over! Phew.) and this may continue for another week or two. He had some unsettling dreams and did not feel rested. Hopefully tonight will be better as he gets used to being home again.
Francesca the home care nurse just visited and went over his medications and also said that home care support is available up to 3 hours a day should M's caregivers need a break. Good to know and keep in mind.
Since it is a beautiful day we are going to go sit out on the "beach" now as M's dad calls it, that is the driveway, and gaze at beautiful Mt. Currie and soak up some sun. Later today Tuula will come visit and tomorrow Amy and Oni will come.
All for now,
Carolyn
The night was a bit rough unfortunately as Marty did not get much sleep. It seems being back home might take a bit of time to get used to again. M's throat is sore from the radiation treatments (now they are over! Phew.) and this may continue for another week or two. He had some unsettling dreams and did not feel rested. Hopefully tonight will be better as he gets used to being home again.
Francesca the home care nurse just visited and went over his medications and also said that home care support is available up to 3 hours a day should M's caregivers need a break. Good to know and keep in mind.
Since it is a beautiful day we are going to go sit out on the "beach" now as M's dad calls it, that is the driveway, and gaze at beautiful Mt. Currie and soak up some sun. Later today Tuula will come visit and tomorrow Amy and Oni will come.
All for now,
Carolyn
April 19 Tuesday
Tuesday, April 19, 2011
I am here at the hospital this evening visiting Marty. Don and Anne (Marty's parents) are here, and so are Carolyn and Oni. Marty had another radiation treatment today and is napping right now. He takes many naps throughout the day now. Today's treatment was #8, which means there are only two more to go. If he feels well enough, we are planning to relocate to Pemberton on Friday. Hopefully the car ride will not make him too nauseous.
The radiation has been irritating Marty's throat a lot, so he has been having trouble eating solid foods. He is doing his best to eat soups and drink smoothies and protein shakes, but he has lost a lot of weight. The radiation has two main goals: There is a tumor putting pressure on a nerve which was causing him a lot of pain in his shoulder. At this point, either the radiation or pain medicines have been effective at warding off that pain, which is a big improvement from when he first came to the hospital two weeks ago. The other goal of the radiation is to decrease the size of a mass which is putting pressure on the superior vena cava, which is the main vein which drains the upper body. This radiation treatment is palliative only, and not able to be curative.
In Pemberton, Marty's mom Anne will be looking after Marty most of the time. The local palliative nurses are able to stop by once a day to check on him and to see how things are going. Marty tries to listen to all his voice-mails, but is not able to call everyone back. If you haven't heard back from Marty in a few days, you can try Oni (Marty's Pemberton and paragliding friend) at 604.698.6532. Regarding visiting, it is hard for me to give clear direction. Sometimes Marty is feeling well enough to have visitors, but other times he is not well enough for visitors. Sometimes he seems too tired, but is able to perk up quite a bit when a friend stops by. Other times a visitor will stop by and he will be sleeping the entire time. I don't want to discourage anyone from visiting, but I want to reiterate that it is best to keep your visits to about an hour, and I cannot guarantee Marty will feel like visiting when you show up.
It is Passover today and this whole week. I am certain Marty's doesn't want any matzah, but I am going to make him some matzah ball soup, which I hope will soothe his throat a bit.
The radiation has been irritating Marty's throat a lot, so he has been having trouble eating solid foods. He is doing his best to eat soups and drink smoothies and protein shakes, but he has lost a lot of weight. The radiation has two main goals: There is a tumor putting pressure on a nerve which was causing him a lot of pain in his shoulder. At this point, either the radiation or pain medicines have been effective at warding off that pain, which is a big improvement from when he first came to the hospital two weeks ago. The other goal of the radiation is to decrease the size of a mass which is putting pressure on the superior vena cava, which is the main vein which drains the upper body. This radiation treatment is palliative only, and not able to be curative.
In Pemberton, Marty's mom Anne will be looking after Marty most of the time. The local palliative nurses are able to stop by once a day to check on him and to see how things are going. Marty tries to listen to all his voice-mails, but is not able to call everyone back. If you haven't heard back from Marty in a few days, you can try Oni (Marty's Pemberton and paragliding friend) at 604.698.6532. Regarding visiting, it is hard for me to give clear direction. Sometimes Marty is feeling well enough to have visitors, but other times he is not well enough for visitors. Sometimes he seems too tired, but is able to perk up quite a bit when a friend stops by. Other times a visitor will stop by and he will be sleeping the entire time. I don't want to discourage anyone from visiting, but I want to reiterate that it is best to keep your visits to about an hour, and I cannot guarantee Marty will feel like visiting when you show up.
It is Passover today and this whole week. I am certain Marty's doesn't want any matzah, but I am going to make him some matzah ball soup, which I hope will soothe his throat a bit.
The lowdown on Visiting Marty
Thursday, April 14, 2011
Marty was moved from Palliative on the 7th floor to Pediatrics on the 3rd. Kind of weird, but they assured us there are often adults in Pediatrics. The move was based on hospital politics and really had nothing to do with Marty in particular. Turns out Pediatrics isn't as nice as Palliative, but what can you do.
The word on visiting is : Marty says to call him on his cell and leave a message if you want to come visit. (He does not have caller ID.) When he feels well he will listen to his messages and call people back to arrange times to visit.
Although you may be tempted, please do not bring Marty any food right now. His mom Anne is on top of the food thing, and he already has SO MUCH FOOD and there is nowhere to put it. If you really really want to bring food, you can check in with Marty and maybe bring dinner (if you are visiting in the evening). But please don't bring dinner unless he says so.
As his last radiation treatment is Thursday April 21, Marty will be in the hospital until Friday April 22nd at least. And I suspect he will be there until after the long weekend, approx Tuesday April 26. Hospital life is drag, so do try to come visit if you can.
-Amy
The word on visiting is : Marty says to call him on his cell and leave a message if you want to come visit. (He does not have caller ID.) When he feels well he will listen to his messages and call people back to arrange times to visit.
Although you may be tempted, please do not bring Marty any food right now. His mom Anne is on top of the food thing, and he already has SO MUCH FOOD and there is nowhere to put it. If you really really want to bring food, you can check in with Marty and maybe bring dinner (if you are visiting in the evening). But please don't bring dinner unless he says so.
As his last radiation treatment is Thursday April 21, Marty will be in the hospital until Friday April 22nd at least. And I suspect he will be there until after the long weekend, approx Tuesday April 26. Hospital life is drag, so do try to come visit if you can.
-Amy
Not much to report. APRIL 14, 2011
I am here with Marty in the hospital today, after spending the night. Yesterday he wasn't feeling well so he skipped his radiation appointment. Today he will get radiation again and meet with the radiation oncologist to discuss things. His pain medications seem to be working, though some of them still make him loopy. His coughing is sometimes severe. He is tired often, but not always. I will try to post more after today's conversation with the doctors.
Comments to be enabled
Sunday, April 10, 2011
Hi,
It is Amy. I am trying to enable the commenting option so that anyone can comment on a post and everyone can see it. This is a test post.
-Amy
It is Amy. I am trying to enable the commenting option so that anyone can comment on a post and everyone can see it. This is a test post.
-Amy
April 5, 2011and April 8, 2011, posts from email
Hi Everyone,
Marty has asked me to do some blogging for him (these have already been sent via email):
April 5, 2011
After two cycles of chemotherapy, Marty has stopped doing chemo as it was not really effective and was making him tired and weak.
He has been having a lot of pain in his shoulder and scapula, and so he was admitted at Lions Gate in North Vancouver in the Palliative Ward.
He is staying there for a few days until he [and the doctors and nurses] can arrive at an effective regimen of pain medicine, ie one that allows him to be pain free and also lets him still be alert and not loopy. He is trying many different drugs which act in many different ways, including muscle relaxers, drugs that target nerves, opiates, and other things. The palliative doctor is very kind and warm and feels confidant that a pain-free solution is achievable. Marty may get radiation treatment to target the tumor which is likely causing the severe shoulder and scapula pain. He may also begin an oral drug which acts similar to the previous Sutent drug which he took for all of 2010.
If you are local, Marty is accepting visitors throughout the day. Please keep visits to under an hour. Realize that when you show up, he may be alert and pain free, but he may also be sleeping, loopy from the pain medicine, or in pain. Sometimes Marty answers his calls and texts.
That is all I have got time for right now. Hopefully more info in the near future.
April 8 2011
Marty had his first radiation treatment today and will have 9 more over the next couple weeks. His parents Anne and Don were with him, and so was Carolyn. It was a long day for him as he went from Lion's Gate in North Vancouver to BC Cancer Agency in Vancouver for his treatment, and there was a lot of waiting and running around to do. It was a beautiful spring day and he got a little time outside in the sun. He is probably going to hold off on the oral cancer treatment pill during radiation, as recommended by the radiation oncologist, but he still has to discuss this change in treatment with his regular oncologist.
I saw Marty this evening for a few hours. We ate dinner in the nice kitchen area on the ward with a few other friends who had come to visit. I think the new regimen of various medications is working out, as Marty was not complaining about pain and was chatting about this and that. Though he says the pain does come and go, so it is not clear exactly what is going on.
Marty would like everyone to call him on his cell before coming to visit, and limit visits to about an hour. Sometimes Marty answers his phone and sometimes he doesn't. Do not take it personally, just try again later. (There is not internet in his room, so he has not been checking email for some time.)
Tomorrow - Friday - Marty and I are going out for dinner, so it is probably not a good time to come visit. The weekend is better as he won't have any radiatin treatments lined up. His brother Phil is arriving from Calgary on Saturday for a couple days.
Also, of there are people whose names you want to be on this list, send them to me and I will include them on future updates. Thanks everyone for your help and support. It is very appreciated, even if it is not always acknowledged.
-Amy
Marty has asked me to do some blogging for him (these have already been sent via email):
April 5, 2011
After two cycles of chemotherapy, Marty has stopped doing chemo as it was not really effective and was making him tired and weak.
He has been having a lot of pain in his shoulder and scapula, and so he was admitted at Lions Gate in North Vancouver in the Palliative Ward.
He is staying there for a few days until he [and the doctors and nurses] can arrive at an effective regimen of pain medicine, ie one that allows him to be pain free and also lets him still be alert and not loopy. He is trying many different drugs which act in many different ways, including muscle relaxers, drugs that target nerves, opiates, and other things. The palliative doctor is very kind and warm and feels confidant that a pain-free solution is achievable. Marty may get radiation treatment to target the tumor which is likely causing the severe shoulder and scapula pain. He may also begin an oral drug which acts similar to the previous Sutent drug which he took for all of 2010.
If you are local, Marty is accepting visitors throughout the day. Please keep visits to under an hour. Realize that when you show up, he may be alert and pain free, but he may also be sleeping, loopy from the pain medicine, or in pain. Sometimes Marty answers his calls and texts.
That is all I have got time for right now. Hopefully more info in the near future.
April 8 2011
Marty had his first radiation treatment today and will have 9 more over the next couple weeks. His parents Anne and Don were with him, and so was Carolyn. It was a long day for him as he went from Lion's Gate in North Vancouver to BC Cancer Agency in Vancouver for his treatment, and there was a lot of waiting and running around to do. It was a beautiful spring day and he got a little time outside in the sun. He is probably going to hold off on the oral cancer treatment pill during radiation, as recommended by the radiation oncologist, but he still has to discuss this change in treatment with his regular oncologist.
I saw Marty this evening for a few hours. We ate dinner in the nice kitchen area on the ward with a few other friends who had come to visit. I think the new regimen of various medications is working out, as Marty was not complaining about pain and was chatting about this and that. Though he says the pain does come and go, so it is not clear exactly what is going on.
Marty would like everyone to call him on his cell before coming to visit, and limit visits to about an hour. Sometimes Marty answers his phone and sometimes he doesn't. Do not take it personally, just try again later. (There is not internet in his room, so he has not been checking email for some time.)
Tomorrow - Friday - Marty and I are going out for dinner, so it is probably not a good time to come visit. The weekend is better as he won't have any radiatin treatments lined up. His brother Phil is arriving from Calgary on Saturday for a couple days.
Also, of there are people whose names you want to be on this list, send them to me and I will include them on future updates. Thanks everyone for your help and support. It is very appreciated, even if it is not always acknowledged.
-Amy
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