Not the most compelling headline, but it's the way we're looking at the world right now. People have all sorts of chronic illnesses that are shocking to deal with at first, but which gradually become a livable part of the scenery.
In May we had an appointment with specialists at the London (ON) Regional Cancer Centre. They retested Malcolm with radio-tagged solutions that are heavier-duty than Toronto's and came up with no visible tumours, though there may yet be micro tumours. They also recalculated a critical number that our Toronto doctor had been scaring us with, and came back with a much lower and happier number. They told us to get on with our lives, go off the Sandostatin and that all was well.
Not content with unfettered happiness, however, we had a conference call a week later with a researcher in Louisiana who is well-respected among the patient community. He told us that the confusing and somewhat worrisome Toronto results and the London happy-happy results weren't actually as far apart as they appeared to be. He felt Malcolm should stay on the Sandostatin, but he agreed that we should feel okay about getting on with our lives. (The medication suppresses tumour growth and also suppresses the tumour's release of damaging levels of serotonin.)
So, here we are. Malcolm's doing well, the kids are doing well, I'm doing well. We're used to this now, and we're feeling confident about life again. We have a level of residual mental and physical tiredness left over from all the excitement of the last year (heck, the last three years, really), but that's fading, too. Like diabetes or MS, we have a chronic disease to monitor and manage. But we have jobs, playdates, wiggly teeth, camping trips, a garden and other things to think about, and it's good to be able to pay attention to those happy little mundane things again.
Tuesday, July 5, 2011
Monday, March 14, 2011
"Clear skies" qualifier
We're feeling very positive right now. Things seem to be going well ... I realize that by saying that out loud, we may attract more attention from jealous gods. But we need the people who love us to know we're feeling good.
Malcolm's neuroendocrine cancer is not curable. But we are clear for now, so we are picking up the pieces and getting on with our lives.
We live in a metaphoric tornado zone and we don't have the option to leave it. We have experienced a couple of healthcare tornadoes, but the skies are clear for now, so we can start re-building.
We are enjoying the very real longer hours of sunlight, the shoots that are starting to come up and the possibilities of the year ahead. N has picked up on this mood and is generally happier and calmer, herself. O, too.
We've congratulated ourselves three nights in a row now for handling tantrums from O, the adorable tyrant, without getting angry back at him ... we've been firm, but compassionate, using all that careful preschool language to help him understand his feelings and find alternate ways of expressing them. (While I make fun of it sometimes, it does actually work.)
All is well.
----------
Malcolm's neuroendocrine cancer is not curable. But we are clear for now, so we are picking up the pieces and getting on with our lives.
We live in a metaphoric tornado zone and we don't have the option to leave it. We have experienced a couple of healthcare tornadoes, but the skies are clear for now, so we can start re-building.
We are enjoying the very real longer hours of sunlight, the shoots that are starting to come up and the possibilities of the year ahead. N has picked up on this mood and is generally happier and calmer, herself. O, too.
We've congratulated ourselves three nights in a row now for handling tantrums from O, the adorable tyrant, without getting angry back at him ... we've been firm, but compassionate, using all that careful preschool language to help him understand his feelings and find alternate ways of expressing them. (While I make fun of it sometimes, it does actually work.)
All is well.
----------
Saturday, March 5, 2011
Good news update
Dear Family & friends,
As some of you know, we've had worries about Malcolm over these last few months. He's had a swollen belly that usually appears only when the liver is malfunctioning, and we were very afraid that there might be another tumour. We learned last week, though, that the swelling is likely due to the fact that his smaller liver is still processing 100 per cent of his blood, causing a blood backup that has then caused some leaking of fluid. However, his liver functions have been improving and his belly disappearing, which means his liver is adjusting. Moreover, recent ultrasounds and CT scans have not revealed any tumours anywhere.
As far as our oncologist and surgeon are concerned, we have clear skies ahead for the foreseeable future.
Thank you for all the kind emails, phone calls, visits, meditations and prayers.
Love,
Heather, Malcolm, N and O
As some of you know, we've had worries about Malcolm over these last few months. He's had a swollen belly that usually appears only when the liver is malfunctioning, and we were very afraid that there might be another tumour. We learned last week, though, that the swelling is likely due to the fact that his smaller liver is still processing 100 per cent of his blood, causing a blood backup that has then caused some leaking of fluid. However, his liver functions have been improving and his belly disappearing, which means his liver is adjusting. Moreover, recent ultrasounds and CT scans have not revealed any tumours anywhere.
As far as our oncologist and surgeon are concerned, we have clear skies ahead for the foreseeable future.
Thank you for all the kind emails, phone calls, visits, meditations and prayers.
Love,
Heather, Malcolm, N and O
Thursday, December 16, 2010
Five organs
Gallbladder, appendix, half his liver, half his large intestine and a couple of feet of small intestine -- gone in one day.
Just under three months ago, Malcolm had surgery that would have been unavailable or unaffordable in many other parts of the world. This morning he was carrying our wiggly 32-lb son, hauling loads of recycling around and doing regular household things. He's napping at this exact moment, but for the most part, he's now able to exert himself and participate almost fully in our daily life.
The MiBG did now show any other tumours, but tumours can be just a few cells, so they're not always visible. In fact, his blood work shows the presence of cancer cells somewhere in his body ... Malcolm's cancer is not curable, but it will be manageable for the foreseeable future.
He's just started a monthly regimen of octreotide (also known as Sandostatin) to keep the symptoms to a minimum. The drugs are $2,000 per shot, but we've been able to get that 100 per cent covered -- another benefit to our location, era, opportunities, etc.
We have days when we feel very sorry for ourselves -- together and individually. And these months have been hard on our kids, especially our 6-1/2-year-old daughter, N, who was having nightmares for a while. But we've had a lot of luck with the availability of medical knowledge and technology, and wonderful support from friends, family and people in the community of cancer patients and caregivers. We've been extremely fortunate.
And it's amazing what you can get used to. Malcolm is still alive and plans to be for a long time. In fact, we're so used to it all now, that we have brief moments of thinking it was really no big deal at all. (Those moments don't last long, though ... it was a big deal.)
Malcolm will head back to work on January 4. I probably won't post any further updates on this blog as there isn't a lot else to say. And as much as we can plan it, we're looking forward to the most boring kind of "normal" for 2011.
Wishing everyone a peaceful and healthy New Year!
Malcolm and Heather
Just under three months ago, Malcolm had surgery that would have been unavailable or unaffordable in many other parts of the world. This morning he was carrying our wiggly 32-lb son, hauling loads of recycling around and doing regular household things. He's napping at this exact moment, but for the most part, he's now able to exert himself and participate almost fully in our daily life.
The MiBG did now show any other tumours, but tumours can be just a few cells, so they're not always visible. In fact, his blood work shows the presence of cancer cells somewhere in his body ... Malcolm's cancer is not curable, but it will be manageable for the foreseeable future.
He's just started a monthly regimen of octreotide (also known as Sandostatin) to keep the symptoms to a minimum. The drugs are $2,000 per shot, but we've been able to get that 100 per cent covered -- another benefit to our location, era, opportunities, etc.
We have days when we feel very sorry for ourselves -- together and individually. And these months have been hard on our kids, especially our 6-1/2-year-old daughter, N, who was having nightmares for a while. But we've had a lot of luck with the availability of medical knowledge and technology, and wonderful support from friends, family and people in the community of cancer patients and caregivers. We've been extremely fortunate.
And it's amazing what you can get used to. Malcolm is still alive and plans to be for a long time. In fact, we're so used to it all now, that we have brief moments of thinking it was really no big deal at all. (Those moments don't last long, though ... it was a big deal.)
Malcolm will head back to work on January 4. I probably won't post any further updates on this blog as there isn't a lot else to say. And as much as we can plan it, we're looking forward to the most boring kind of "normal" for 2011.
Wishing everyone a peaceful and healthy New Year!
Malcolm and Heather
Monday, November 29, 2010
MiBG (not the jet, not the car)
Malcolm will have the first of two or three MiBG scintigraphy scans tomorrow, with the second on Wednesday and possibly a third on Thursday. These scans use a radioactive isotope to try to mark other tumours in the body. So on Saturday, Malcolm began taking an iodine solution to protect his thyroid, and today he got the radioisotope injection.
This afternoon, we'll meet the endocrinologist-oncologist, Shereen Ezzat. We have a few questions for him, but it's hard to know exactly what to ask, so we hope he'll volunteer a lot ... nothing is absolute with this. Several of the measurements are not as negative (in the emotional sense) as they could be. But that doesn't mean Malcolm is cured. And Malcolm's and my own understanding of what we're being told keeps shifting -- for example, the first doctor to give us the name of the disease specifically said it wasn't cancer. But it is cancer. That particular doctor is just one of the group of physicians who don't want to use the word because NETs are usually so slow-growing.
One of the things I want to know relates to the 20 samples that were tested for their rate of growth. These samples were each assigned a rating of between 2 and 20. The rating system is such that 15 is pretty good, but anything over that is more serious, and 20 is quite serious. So how many of our samples were over 15? Where were those fast-growing ones located? What does this mean over the long term?
The surgeon and the oncologist may be able to answer the first couple of questions, but the last question is always going to be a gamble.
This afternoon, we'll meet the endocrinologist-oncologist, Shereen Ezzat. We have a few questions for him, but it's hard to know exactly what to ask, so we hope he'll volunteer a lot ... nothing is absolute with this. Several of the measurements are not as negative (in the emotional sense) as they could be. But that doesn't mean Malcolm is cured. And Malcolm's and my own understanding of what we're being told keeps shifting -- for example, the first doctor to give us the name of the disease specifically said it wasn't cancer. But it is cancer. That particular doctor is just one of the group of physicians who don't want to use the word because NETs are usually so slow-growing.
One of the things I want to know relates to the 20 samples that were tested for their rate of growth. These samples were each assigned a rating of between 2 and 20. The rating system is such that 15 is pretty good, but anything over that is more serious, and 20 is quite serious. So how many of our samples were over 15? Where were those fast-growing ones located? What does this mean over the long term?
The surgeon and the oncologist may be able to answer the first couple of questions, but the last question is always going to be a gamble.
Thursday, November 25, 2010
Food and the GO gang
Thank you to Malcolm's colleagues for the gift certificate to TodaysMenu.ca. Very thoughtful!
Thursday, November 18, 2010
Rest is best
I'm glad to tell you that Malcolm has agreed to stay off work until January. He's been getting stronger all the time, but he still can't do a full "regular" day, and crowds or days with a lot of activity seem to knock him out for a day or two after. So, I'm relieved that he's not going to force things too early.
We'd talked about a part-time return to work on the week of the 29th, because he's feeling as if he should be there. But he's still got so many medical appointments that it would be choppy at best. And the most critical thing is that he tires too quickly.
We'd talked about a part-time return to work on the week of the 29th, because he's feeling as if he should be there. But he's still got so many medical appointments that it would be choppy at best. And the most critical thing is that he tires too quickly.
Sunday, November 7, 2010
My lover's liver: what you really want to know
We sat down with our surgeon, Carol-Anne Moulton, on Thursday and got lots of news.
The short version of this story is that Malcolm will probably be okay for a long time. Probably. He is not cured, but there is a good likelihood of a long and relatively healthy life.
The longer version involves a lot of detail, if you're interested. But we are feeling pretty good compared to where we were a couple of months ago.
There were six tumours removed from his liver, but I don't have the complete count of the number taken from his colon and appendix. They had to remove about 60 percent of his liver, plus a third to one-half of his large intestine (colon) and a small section of his small intestine.
There were several tests done to confirm the cancer and measure its severity. These include (1) a CgA blood test, (2) a 5HiAA urine test, (3) lymph-node testing, (4) stain testing.
(1) & (2) test the presence of cancer-specific activities. CgA (Chromogranin A) testing measures the presence of certain types of NET cancers through the levels or quality of certain blood products. Malcolm's CgA prior to the surgery was 141, where "normal" is 100.
5HiAA testing shows the level of excess serotonin in the body, and tells us whether/ not the tumours were the damaging ones we were worried about. Malcolm's were 185, where "normal" is less than 50. We did not observe any of the symptoms of this high level, and as far as we can tell, he does not have any of the possible heart or lung damage.
Since all the tumours that could be found have been removed, we are hoping that the follow-up tests will show "normal" levels. [Oh, those quotation marks ...]
(3) Dr. Moulton removed 39 lymph nodes from Malcolm's large intestine. Of those, three had metastatic NET cancer. ("Metastatic" just means that it's spread from the primary site.) Since the lymph nodes run in chains, it would seem to make sense if cancer from one spread to the next in line. Sometimes this happens, but sometimes the cancer skips a node and appears in one further down the line. But the fact that only three out of 39 showed cancer suggests that it is probably -- though not 100 percent -- that he will not have the same volume of tumours in the future.
This is partly what a surgeon means when they talk about "margins". Is there a clear cancer-free barrier between the tumour and the cuts that were made? In Malcolm's case, the answer with respect to the lymph nodes is, "probably." The pathologist said, though, that there were clear margins in the liver tumours.
(4) After the tumours were removed, an additional test was done on the tumours to see how they reacted to a specific stain. This measures the rate of growth of the tumours. The faster they grow, the scarier.
In Malcolm's case, 20 sections were tested, and the results ranged from 2 to 20, where less than 15 is optimal. Dr. Moulton says that this means that the severity is "mild to moderate"
What this means to us: We're doing okay. Malcolm is getting stronger every day. We still need your patience, help here and there, your good wishes and prayers, and your ears. We do still need your support. But as every day passes, we'll be closer to "normal". [Quotation marks again.]
Interesting digression: Dr. Moulton tells us that the liver will have completely replaced the missing volume by now, less than six weeks post-surgery. The liver has eight sections, and you can remove a number of them without a problem. The lost ones are not regenerated, but the remaining sections will grow to create a liver that is the same size and functioning as the original. So, Malcolm lost the right lobe of his liver, and though he will not get a new right lobe, the left lobe can compensate -- and pretty quickly, too.
The short version of this story is that Malcolm will probably be okay for a long time. Probably. He is not cured, but there is a good likelihood of a long and relatively healthy life.
The longer version involves a lot of detail, if you're interested. But we are feeling pretty good compared to where we were a couple of months ago.
There were six tumours removed from his liver, but I don't have the complete count of the number taken from his colon and appendix. They had to remove about 60 percent of his liver, plus a third to one-half of his large intestine (colon) and a small section of his small intestine.
There were several tests done to confirm the cancer and measure its severity. These include (1) a CgA blood test, (2) a 5HiAA urine test, (3) lymph-node testing, (4) stain testing.
(1) & (2) test the presence of cancer-specific activities. CgA (Chromogranin A) testing measures the presence of certain types of NET cancers through the levels or quality of certain blood products. Malcolm's CgA prior to the surgery was 141, where "normal" is 100.
5HiAA testing shows the level of excess serotonin in the body, and tells us whether/ not the tumours were the damaging ones we were worried about. Malcolm's were 185, where "normal" is less than 50. We did not observe any of the symptoms of this high level, and as far as we can tell, he does not have any of the possible heart or lung damage.
Since all the tumours that could be found have been removed, we are hoping that the follow-up tests will show "normal" levels. [Oh, those quotation marks ...]
(3) Dr. Moulton removed 39 lymph nodes from Malcolm's large intestine. Of those, three had metastatic NET cancer. ("Metastatic" just means that it's spread from the primary site.) Since the lymph nodes run in chains, it would seem to make sense if cancer from one spread to the next in line. Sometimes this happens, but sometimes the cancer skips a node and appears in one further down the line. But the fact that only three out of 39 showed cancer suggests that it is probably -- though not 100 percent -- that he will not have the same volume of tumours in the future.
This is partly what a surgeon means when they talk about "margins". Is there a clear cancer-free barrier between the tumour and the cuts that were made? In Malcolm's case, the answer with respect to the lymph nodes is, "probably." The pathologist said, though, that there were clear margins in the liver tumours.
(4) After the tumours were removed, an additional test was done on the tumours to see how they reacted to a specific stain. This measures the rate of growth of the tumours. The faster they grow, the scarier.
In Malcolm's case, 20 sections were tested, and the results ranged from 2 to 20, where less than 15 is optimal. Dr. Moulton says that this means that the severity is "mild to moderate"
What this means to us: We're doing okay. Malcolm is getting stronger every day. We still need your patience, help here and there, your good wishes and prayers, and your ears. We do still need your support. But as every day passes, we'll be closer to "normal". [Quotation marks again.]
Interesting digression: Dr. Moulton tells us that the liver will have completely replaced the missing volume by now, less than six weeks post-surgery. The liver has eight sections, and you can remove a number of them without a problem. The lost ones are not regenerated, but the remaining sections will grow to create a liver that is the same size and functioning as the original. So, Malcolm lost the right lobe of his liver, and though he will not get a new right lobe, the left lobe can compensate -- and pretty quickly, too.
Wednesday, November 3, 2010
More detail than you probably want to know
There isn't a lot to add to previous posts. Malcolm still sleeps a lot, though less and less each day. His weight is still lower than it should be, but his appetite is growing, so that will hopefully catch up.
Still getting chills and needing to wear a hat in the house from time to time. That should clear up as he puts on some weight.
He's walking longer distances, and needing less recovery time after. He's trying to get himself back into a waking routine that will prepare him to go back to work -- though we haven't set a date for that, yet.
He's helping more with the kids and is starting to take on some chores, though still no lifting.
Some pain in his gut, but he stopped taking the Oxycodone on the 28th and hasn't taken any painkillers since.
Will post more when I have more to tell you!
Still getting chills and needing to wear a hat in the house from time to time. That should clear up as he puts on some weight.
He's walking longer distances, and needing less recovery time after. He's trying to get himself back into a waking routine that will prepare him to go back to work -- though we haven't set a date for that, yet.
He's helping more with the kids and is starting to take on some chores, though still no lifting.
Some pain in his gut, but he stopped taking the Oxycodone on the 28th and hasn't taken any painkillers since.
Will post more when I have more to tell you!
Monday, October 25, 2010
Wiggles photos
These are a few shots from the Wiggles concert on the 23rd.Fun show. It was great watching the kids dance and sing, but there were just enough off-the-wall comments to inject some adult humour into the program, too. For example, Captain Feathersword (now there's a name, hey?) singing "My Sharona" in a Donald Duck voice, which meant that the kids couldn't actually follow the lyrics, while most of the parents were smirking.
Malcolm had a good time watching the kids and seeing the antics of the performers. It did take a lot out of him, though, and he slept most of Sunday.
Friday, October 22, 2010
Some steps back
When someone says "cancer", most of us panic. But over time, even that can become routine, I guess. Especially if it seems that the patient is getting better.
But the reality of life in our home is that we're in limbo ... even when things seem normal, there's a good probability that there will be a setback.
At first, Malcolm seemed to be recovering quickly, which we credited to his improved fitness after his heart event last year. But then his recovery slowed down. And then last night he had a bad bought of shivering, bundled up on our couch in a hat, fleece sweaters and blankets.
From his description, it sounded like the kind of shivering you get when you've stayed up all night. And in fact, he'd been awake for 12 hours with only a 45-minute snooze before dinner -- a marathon for a guy who lost half his liver and a chunk of intestine three weeks ago.
Malcolm is still weak, and it's clear that we're going to have to take this very, very slowly.
A couple of months ago we gambled that he'd be stronger at this point, and we bought tickets to take the kids to see tomorrow afternoon's Wiggles concert at the Rogers Centre. Malcolm probably shouldn't go, but he's been looking forward to seeing N & O boogieing to their favourite musicians.
If I encouraged him to stay home, I'm sure he would. He's so tired. But this is one of those things that a parent wants to do, and it would be a huge disappointment for him to miss it. So I'll keep the kids out of the house tomorrow morning so Malcolm can sleep, and then I'll bring him back right away after so he can go back to sleep.
If it all works out, I'll try to take some photos of the four of us at the concert and post them later.
But the reality of life in our home is that we're in limbo ... even when things seem normal, there's a good probability that there will be a setback.
At first, Malcolm seemed to be recovering quickly, which we credited to his improved fitness after his heart event last year. But then his recovery slowed down. And then last night he had a bad bought of shivering, bundled up on our couch in a hat, fleece sweaters and blankets.
From his description, it sounded like the kind of shivering you get when you've stayed up all night. And in fact, he'd been awake for 12 hours with only a 45-minute snooze before dinner -- a marathon for a guy who lost half his liver and a chunk of intestine three weeks ago.
Malcolm is still weak, and it's clear that we're going to have to take this very, very slowly.
A couple of months ago we gambled that he'd be stronger at this point, and we bought tickets to take the kids to see tomorrow afternoon's Wiggles concert at the Rogers Centre. Malcolm probably shouldn't go, but he's been looking forward to seeing N & O boogieing to their favourite musicians.
If I encouraged him to stay home, I'm sure he would. He's so tired. But this is one of those things that a parent wants to do, and it would be a huge disappointment for him to miss it. So I'll keep the kids out of the house tomorrow morning so Malcolm can sleep, and then I'll bring him back right away after so he can go back to sleep.
If it all works out, I'll try to take some photos of the four of us at the concert and post them later.
Thursday, October 21, 2010
Stress reduction and thanks
It's been a week or so since the last posting ... we're doing okay -- Malcolm is walking more, and better able to do things with the kids. And this has taken some pressure off me, too, and of course, makes the kids happier. So we're all doing better.
Malcolm is still sleeping 16+ hours a day. Yesterday and today, he tried to replace some of the Oxycodones with extra-strength Tylenol in the hopes that he'd be able to stay awake longer, but the pain is still too intense.
Also yesterday, we went to see a surgical nurse at TGH to deal with a red, swollen area on the incision. Fortunately, the spot appears to be some normal part of the healing process that should resolve itself over time.
We need to thank a bunch of people for food, visits, flowers and physical labour ... my mother, Anne F, was here last week to help me sort out the kids' old clothes (four garbage bags full) and get them ready for donation. She also dropped off some of her fantastic home-made applesauce. Malcolm's mom, Jean H, attacked more of the garden on Friday and has prepared it for bulb-planting. [Anyone want to take on that on?]
Neighbours Sophie L. and Gabrielle L. babysat Malcolm and O on nights when I was out at Sparks with N. Sarah D has given us many spontaneous afternoon playdates so that I could run errands, help Malcolm or visit him in the hospital. Other playdate friends like Shana & Nathan and Donna & Ha are helping give us breaks, too.
Calls and emails from Kathy A, John & Frances, Karen M, Patricia H, Ruwa S and Leslie C to lend an ear, or otherwise help take care of me and the kids.
Lotsa good food from Julie P (best lasagna ever), TienTien and her mother, Qu Shi Hong. Flowers from TT and QSH and my brother Cal and SIL Karen in Australia. Magazines from brother Don and SIL Sue in Alberta. Visits from Tom K, Miranda B, Doug H, Jim H, Andy S, Herman K, Uncle Doglan and Emily, Gerry G. ...
And of course, Steve Misanthrope (it should be his real name). Steve is really the person Malcolm should have married. Steve hung bike racks for us, rotated our tires and replaced our brakes. Steve, who works at TGH, called me regularly while Malcolm was in the hospital -- on the surface so that he could nag at me about things I needed to do/bring for Malcolm, but he always managed to work in something to help me out, too.
Steve is one of the crankiest, most profane, middle-aged geezers you'll ever meet. But that's all just a front ... the guy is really a marshmallow. But don't tell him I said that, because he'll get all embarrassed and belligerent. ;~) He's been incredibly generous.
Everyone's been generous. We are blessed.
We're still a ways from "normal", whatever that will be. But we're feeling much more hopeful than we did during the weeks leading up to the surgery. There will be no news from the surgical team until November, though. But we are hopeful.
Malcolm is still sleeping 16+ hours a day. Yesterday and today, he tried to replace some of the Oxycodones with extra-strength Tylenol in the hopes that he'd be able to stay awake longer, but the pain is still too intense.
Also yesterday, we went to see a surgical nurse at TGH to deal with a red, swollen area on the incision. Fortunately, the spot appears to be some normal part of the healing process that should resolve itself over time.
We need to thank a bunch of people for food, visits, flowers and physical labour ... my mother, Anne F, was here last week to help me sort out the kids' old clothes (four garbage bags full) and get them ready for donation. She also dropped off some of her fantastic home-made applesauce. Malcolm's mom, Jean H, attacked more of the garden on Friday and has prepared it for bulb-planting. [Anyone want to take on that on?]
Neighbours Sophie L. and Gabrielle L. babysat Malcolm and O on nights when I was out at Sparks with N. Sarah D has given us many spontaneous afternoon playdates so that I could run errands, help Malcolm or visit him in the hospital. Other playdate friends like Shana & Nathan and Donna & Ha are helping give us breaks, too.
Calls and emails from Kathy A, John & Frances, Karen M, Patricia H, Ruwa S and Leslie C to lend an ear, or otherwise help take care of me and the kids.
Lotsa good food from Julie P (best lasagna ever), TienTien and her mother, Qu Shi Hong. Flowers from TT and QSH and my brother Cal and SIL Karen in Australia. Magazines from brother Don and SIL Sue in Alberta. Visits from Tom K, Miranda B, Doug H, Jim H, Andy S, Herman K, Uncle Doglan and Emily, Gerry G. ...
And of course, Steve Misanthrope (it should be his real name). Steve is really the person Malcolm should have married. Steve hung bike racks for us, rotated our tires and replaced our brakes. Steve, who works at TGH, called me regularly while Malcolm was in the hospital -- on the surface so that he could nag at me about things I needed to do/bring for Malcolm, but he always managed to work in something to help me out, too.
Steve is one of the crankiest, most profane, middle-aged geezers you'll ever meet. But that's all just a front ... the guy is really a marshmallow. But don't tell him I said that, because he'll get all embarrassed and belligerent. ;~) He's been incredibly generous.
Everyone's been generous. We are blessed.
We're still a ways from "normal", whatever that will be. But we're feeling much more hopeful than we did during the weeks leading up to the surgery. There will be no news from the surgical team until November, though. But we are hopeful.
Monday, October 11, 2010
How you can help
Some of our friends have been asking how they can help us, so we've handed out a few jobs where we can: gardening, cleaning, sorting kids' clothes and toys, etc., etc. But it's hard to know how to delegate these little details of our life ...
The Canadian Cancer Society publishes some useful booklets for cancer patients and their families and friends. Here's a link to a short brochure about helping cancer patients, but the information could apply to helping anyone in your life in a tough situation: Helping someone with cancer: What you can do.
There's a longer book that is also very good, but which is more about the day-to-day and longer-term challenges of cancer. It's called Living with cancer: A guide for people with cancer and their caregivers.
The Canadian Cancer Society publishes some useful booklets for cancer patients and their families and friends. Here's a link to a short brochure about helping cancer patients, but the information could apply to helping anyone in your life in a tough situation: Helping someone with cancer: What you can do.
There's a longer book that is also very good, but which is more about the day-to-day and longer-term challenges of cancer. It's called Living with cancer: A guide for people with cancer and their caregivers.
Friday, October 8, 2010
Thanksgiving Friday
Malcolm's been home for two days now. It's good for us to have him here, and hopefully better for him than at Toronto General. He's on Oxycodone and sleeps 16-18 hours a day. Hard to keep the kids or myself quiet, but at least he doesn't have the constant clatter, smell and atmosphere of the hospital.
He's been out for some short, slow walks and is actually taking the lowest dose of painkillers he can ... we saw his GP this morning and the GP suggested taking them a little more often than Malcolm has been.
The 34 staples came out on Wednesday before he came home, and the incision looks like it's healing well.
He's eating small amounts of food, but eating frequently. Malcolm's actually lost enough weight at this point that he often feels cold, so he's indulging a bit in some higher-fat food that he'd been avoiding after last year's heart "event". (Not an attack, for those who don't know, but sharp chest pains that led to an angioplasty for several 80 per cent-blocked arteries.)
Kids are happy to have him home, of course. N is able to remember to be gentle, but O keeps forgetting that he can't sit on Baba's lap, or that Baba can't lift him up. Both of these things will clear up soon enough, though.
Everyone's tired. We're looking forward to a quiet Thanksgiving weekend ... we do have much to be thankful for.
He's been out for some short, slow walks and is actually taking the lowest dose of painkillers he can ... we saw his GP this morning and the GP suggested taking them a little more often than Malcolm has been.
The 34 staples came out on Wednesday before he came home, and the incision looks like it's healing well.
He's eating small amounts of food, but eating frequently. Malcolm's actually lost enough weight at this point that he often feels cold, so he's indulging a bit in some higher-fat food that he'd been avoiding after last year's heart "event". (Not an attack, for those who don't know, but sharp chest pains that led to an angioplasty for several 80 per cent-blocked arteries.)
Kids are happy to have him home, of course. N is able to remember to be gentle, but O keeps forgetting that he can't sit on Baba's lap, or that Baba can't lift him up. Both of these things will clear up soon enough, though.
Everyone's tired. We're looking forward to a quiet Thanksgiving weekend ... we do have much to be thankful for.
Tuesday, October 5, 2010
Paroled!
Malcolm is now on solid food and coming home tomorrow.
Today is the last chance for you Ministry of Culture -types to have a conveniently located visit! [Toronto General, East Wing, 9th floor, room 422]
For the last couple of days, he's been joining N, O and me for breakfast and dinner via the speaker-phone button on our home phone. We phone him, turn the speaker on and put the phone in the middle of the table while we eat. Malcolm gets to enjoy all the bickering and nagging he's become accustomed to.
Last night was the most coherent from Malcolm, but also very heartbreaking from the kids. Six-year-old N and almost-four-year-old O were having a particularly tough time of it ... N was crying about every little disappointment, and O was tantrumming at every denied request or any perceived slight from his sister. I couldn't get dinner ready because I was having to comfort tears or break up spats, so I called Malcolm and then got the kids to sit at the table and tell him about their days. N was having trouble speaking at all -- she appeared to be upset about not having scored as well as she wanted on a spelling test. But when she was finally able to speak, it was a wrenching, "I miss you, Baba!" then more sobbing.
He kept the kids going, though, and we did finally get dinner on the table. And with some food in their tummies and some teasing from their dad, N and O brightened up.
This morning's news -- shared over breakfast -- that Malcolm is coming home tomorrow has cheered us all up considerably. I'm know it's helped him, too.
Today is the last chance for you Ministry of Culture -types to have a conveniently located visit! [Toronto General, East Wing, 9th floor, room 422]
For the last couple of days, he's been joining N, O and me for breakfast and dinner via the speaker-phone button on our home phone. We phone him, turn the speaker on and put the phone in the middle of the table while we eat. Malcolm gets to enjoy all the bickering and nagging he's become accustomed to.
Last night was the most coherent from Malcolm, but also very heartbreaking from the kids. Six-year-old N and almost-four-year-old O were having a particularly tough time of it ... N was crying about every little disappointment, and O was tantrumming at every denied request or any perceived slight from his sister. I couldn't get dinner ready because I was having to comfort tears or break up spats, so I called Malcolm and then got the kids to sit at the table and tell him about their days. N was having trouble speaking at all -- she appeared to be upset about not having scored as well as she wanted on a spelling test. But when she was finally able to speak, it was a wrenching, "I miss you, Baba!" then more sobbing.
He kept the kids going, though, and we did finally get dinner on the table. And with some food in their tummies and some teasing from their dad, N and O brightened up.
This morning's news -- shared over breakfast -- that Malcolm is coming home tomorrow has cheered us all up considerably. I'm know it's helped him, too.
Sunday, October 3, 2010
Sunday social
Today was a full of socializing -- Jim & Jean H, Doug F & Emily A, Stevie Misanthrope, Kathy A & Rob G, me, and at 7pm, Doug H. Malcolm also ate some semi-solid food in the form of a cream soup of mysterious origin, which is another positive milestone.
I'm told that he flashed the scar at everyone today, too. It sure is a beautiful thing, in the shape of a 5-by-8-inch "L", complete with a LOT of tidy little stainless-steel staples.
I'm told that he flashed the scar at everyone today, too. It sure is a beautiful thing, in the shape of a 5-by-8-inch "L", complete with a LOT of tidy little stainless-steel staples.
Saturday, October 2, 2010
Gourmet Magazine & TGH
Malcolm has now graduated to Jello, ginger ale and apple juice.
For his weekly column in Gourmet Magazine, he writes:
For his weekly column in Gourmet Magazine, he writes:
"The cherry Jello is simply spectacular and should be at the top of any food connoisseur's list of hospital delicacies. A subtly mixed cocktail of ginger ale, apple juice and just a touch of morphine is a willing partner -- though not quite guaranteed to get things moving as hoped.
"The strawberry Jello, alas, leaves much to be desired, and the ginger ale or apple juice alone leaves a nasty aftertaste on the palate.
"Toronto General Hospital's ambiance could be much improved if it would consider adding a half-and-half mixture of vodka to the Jello, and serve it in tiny little cups. Loud party music and a disco ball would support this gesture."
Friday, October 1, 2010
Friday update
Malcolm's doing much, much better today. The tube is gone from his nose, and he's using about a third of the morphine he's allowed, which means he's much more coherent. At this exact moment he is reading, which is a huge step forward as he still wasn't able to focus his eyes or concentrate enough yesterday.
And speaking of steps forward, he can get out of bed by himself (despite 10 inches of cut abdominal muscles, etc.) and today walked six laps around the ward with no support or assistance.
Malcolm is hoping to come home Sunday, but he's still not allowed to eat. Given his progress so far, however, eating will probably happen soon.
And speaking of steps forward, he can get out of bed by himself (despite 10 inches of cut abdominal muscles, etc.) and today walked six laps around the ward with no support or assistance.
Malcolm is hoping to come home Sunday, but he's still not allowed to eat. Given his progress so far, however, eating will probably happen soon.
Thursday, September 30, 2010
Help needed on Friday
We're hoping someone can visit Malcolm on Friday night, perhaps after 6pm. If you are able to sit with him, could you please call me on my cell at 416-995-5154 and let me know? You can come earlier, too, but the hours of 6-9 are the time when it's hardest to get assistance.
By the way, he's showing visible improvement every day. Still shaky and sleepy, but much less so than he was on Tuesday and Wednesday.
By the way, he's showing visible improvement every day. Still shaky and sleepy, but much less so than he was on Tuesday and Wednesday.
Wednesday, September 29, 2010
Please visit -- but with caution
Malcolm's opiate experience was great on Tuesday, but it's now starting to wear him down emotionally. On the good side, he's got more energy than he did yesterday. Please be aware, though, that "more energy" still isn't what it should be and he needs to doze off frequently. But he is definitely looking forward to company. Feel free to bring insulting get-well cards.
If you can stay for a while, bring reading material just in case he needs to doze for a few minutes during your visit.
Visiting hours at Toronto General Hospital are 11am - 9pm. He's in the east wing, 9th floor, room 422.
If you can stay for a while, bring reading material just in case he needs to doze for a few minutes during your visit.
Visiting hours at Toronto General Hospital are 11am - 9pm. He's in the east wing, 9th floor, room 422.
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