This is a less discussed issue relating to cancer diagnosis and treatment - the guilt factor. Sometimes its not even mentioned, while other times it is just brushed off as something you need to learn to live with.
Guilt is what got you to do what you were supposed to when you were a child. Guilt is what your morals use to keep you in line.
But then we feel cancer guilt which is different. Why didn't I get it and they did? Why did they have a recurrence and I didn't?
The more cancer friends I have gained, I have also lost some. I have the little list of in memorium blogs I used to follow, the group of friends on Facebook that are no longer here and are in memorium, there are the phone numbers in my phone that I know don't work any more. And when they do again, it will be a stranger's voice on the other end.
It seems now every month or two, or even more frequently, someone I know either has just learned about their stage IV diagnosis or I learn about their funeral arrangements.
Each time, there is a double dose of emotions the little tiny - "I'm glad it wasn't me" which is immediately followed by the huge "how could I even think that?" and then followed by cancer survivor guilt.
Sometimes the guilt lurks in the back ground and sometimes it emerges up front. It gives us down days but then we stuff it away and we learn to cope again. But its always there.
Showing posts with label death. Show all posts
Showing posts with label death. Show all posts
End of life issues
Modern medicine has progressed to the point that often death comes only after you are 'unplugged' so to speak. We keep our hopes up that time will be far in the future. We plan the way we want to go with our living wills, health care proxies, etc. But I do often wonder how do doctors and health care professionals decide when it does not do any good.
I am being morbid here? I don't think so. I read two articles recently that caused me to do some thinking (which I know can be dangerous but not morbid).
The first one discusses dying connected to a machine. Do you want to die tethered to a machine? I do not thank you. I do not want to die connected to any machine which might be the least bit uncomfortable.
There is also the issue of what could be called 'futile' care. When does caregiving stop having a benefit? When are doctors continuing to treat patients when there is no benefit? There must be a fine line where the body is too weak or sick to respond to treatment or there simply are no more treatments available. Once that line is crossed, anything more than palliative care is futile. Even keeping someone on a machine could be futile if its merely keeping their lungs breathing and heart pumping.
The article talks about building trust between doctors and patients. But this also should include patients families so they understand that there is nothing left to be done.
I am being morbid here? I don't think so. I read two articles recently that caused me to do some thinking (which I know can be dangerous but not morbid).
The first one discusses dying connected to a machine. Do you want to die tethered to a machine? I do not thank you. I do not want to die connected to any machine which might be the least bit uncomfortable.
There is also the issue of what could be called 'futile' care. When does caregiving stop having a benefit? When are doctors continuing to treat patients when there is no benefit? There must be a fine line where the body is too weak or sick to respond to treatment or there simply are no more treatments available. Once that line is crossed, anything more than palliative care is futile. Even keeping someone on a machine could be futile if its merely keeping their lungs breathing and heart pumping.
The article talks about building trust between doctors and patients. But this also should include patients families so they understand that there is nothing left to be done.
That other emotion with cancer
Survivor guilt often hits cancer patients later one. We are diagnosed and are hit with the why me mentality. Then as we come to accept and adapt to our cancer diagnosis, we tend to meet others who are also dealing with their cancer diagnosis. Then sometimes they are not so lucky and don't make it. Then we are faced with survivor guilt.
I can sympathize with this. I had thyroid cancer in 1981.When I returned to school shortly after that I lived in a dorm on a coed floor. That year the school had a mural painting contest on each floor. On the other side of the floor was an artistic student, in fact his father was an art professor, who painted an amazing mural. I can't remember if we won the contest or not but I do remember Andy the painter.
Within a year or so we learned Andy had an aggressive form of brain cancer and dropped out to focus on his treatment. He did show up at a party I hosted in a wheelchair once. But that was the last time I saw him. He didn't make it much longer. Why him? He was younger than me. That was when I first felt the first twinges of survivor guilt.
Later in life, I have met many more people with their own cancer diagnosis. Some are doing well, some are no longer with us. Some became very good friends as we talked about cancer and life with it. The closer I get to them, the harder it is when they don't make it. I have been to too many funerals recently.
Why don't they make it too? Cancer is treatable in many ways these days but there is still a long way to go. The guilt that I have made it twice through cancer and they did not make it through their cancer lives in the background.
This is another emotion with cancer that we must learn to cope with as we live our lives and go from doctor appointment to doctor appointment. This is also accompanied by the chronic fear that we don't want to get moved to the category of 'the ones who don't make it'.
I can sympathize with this. I had thyroid cancer in 1981.When I returned to school shortly after that I lived in a dorm on a coed floor. That year the school had a mural painting contest on each floor. On the other side of the floor was an artistic student, in fact his father was an art professor, who painted an amazing mural. I can't remember if we won the contest or not but I do remember Andy the painter.
Within a year or so we learned Andy had an aggressive form of brain cancer and dropped out to focus on his treatment. He did show up at a party I hosted in a wheelchair once. But that was the last time I saw him. He didn't make it much longer. Why him? He was younger than me. That was when I first felt the first twinges of survivor guilt.
Later in life, I have met many more people with their own cancer diagnosis. Some are doing well, some are no longer with us. Some became very good friends as we talked about cancer and life with it. The closer I get to them, the harder it is when they don't make it. I have been to too many funerals recently.
Why don't they make it too? Cancer is treatable in many ways these days but there is still a long way to go. The guilt that I have made it twice through cancer and they did not make it through their cancer lives in the background.
This is another emotion with cancer that we must learn to cope with as we live our lives and go from doctor appointment to doctor appointment. This is also accompanied by the chronic fear that we don't want to get moved to the category of 'the ones who don't make it'.
That battle thing
Earlier this week, we went to see the rehearsal for the Battle of Lexington, which will be held at 530am on Monday morning if you wish to see the real thing. (I'll be sleeping thank you.) That is a battle, which led to a war, which led to the Constitution, the United States, and somehow to where we got to today with a polarized government, financial problems, and global warming. But I digress.
There has been much talk recently about Roger Ebert and how he lost his battle with cancer. He didn't lose his battle. He lived his life and then died. Where did we get this battle thing regarding cancer and other ailments anyway? A battle is not about medical ailments.
If you look at Dictionary.com we get:
There has been much talk recently about Roger Ebert and how he lost his battle with cancer. He didn't lose his battle. He lived his life and then died. Where did we get this battle thing regarding cancer and other ailments anyway? A battle is not about medical ailments.
If you look at Dictionary.com we get:
bat•tle1 [bat-l] noun, verb, bat•tled, bat•tling.
noun
- a hostile encounter or engagement between opposing military forces: the battle of Waterloo.
- participation in such hostile encounters or engagements: wounds received in battle.
- a fight between two persons or animals: ordering a trial by battle to settle the dispute.
- any conflict or struggle: a battle for control of the Senate.
- Archaic. a battalion.
Do you see anything cancer related or medical related there? I don't. So why do we use these terms? Opposing military forces are not related to cancer.
If one has cancer or other ailments, they are not participating in hostile encounters or engagements.
If one has cancer or other ailments, they are not fighting with another person or animal.
Having cancer is not a conflict or struggle, its an ailment that is treated.
And cancer has nothing to do with a battalion, even in old English.
Maybe because someone thought they made them stronger if they were battling?
Maybe because someone thought a battle or war is a better image than a person?
Maybe because someone DIDN'T think?
Please do not tell me I am battling anything. I am not. I am living with multiple ailments. I have a life and I am not at war. Roger Ebert did not battle anything, he also was a person living with medical ailments as well.
On being an inspiration
Yesterday I went to the wake for a friend, Sue, who had been diagnosed with breast cancer 21 years ago. When I met her in the breast cancer support group I used to attend probably around five years ago, she had been stage IV for a number of years - probably more than a dozen.
She was quiet when she started attending the support group but then started to open up about her story. She had a cheerful smile and a twinkle in her eyes. No matter what she was going through you would always smile. Over the years, I helped convince her to go on a Casting For Recovery retreat and watched her learn to fly fish - we never caught anything but it was the fun.
I stopped attending the support group several years ago but would still see her at events hosted by the center which runs the group. She was always smiling and poised, never letting the inner stresses dampen her spirits.
I met her family yesterday. Her husband, who I had never met before, asked how I knew her and I told him about the breast cancer support group. He said that it was a wonderful little organization and told me the story that she had told him. One of the other members of the support group came up to Sue and told her that she was an inspiration to her on how to live with breast cancer.
I thought about that and decided that I agree. She had late stage cancer and greeted the world with a smile and a twinkle in her eye. She didn't let it stop her from trying something new and having fun. I am inspired as well.
She was quiet when she started attending the support group but then started to open up about her story. She had a cheerful smile and a twinkle in her eyes. No matter what she was going through you would always smile. Over the years, I helped convince her to go on a Casting For Recovery retreat and watched her learn to fly fish - we never caught anything but it was the fun.
I stopped attending the support group several years ago but would still see her at events hosted by the center which runs the group. She was always smiling and poised, never letting the inner stresses dampen her spirits.
I met her family yesterday. Her husband, who I had never met before, asked how I knew her and I told him about the breast cancer support group. He said that it was a wonderful little organization and told me the story that she had told him. One of the other members of the support group came up to Sue and told her that she was an inspiration to her on how to live with breast cancer.
I thought about that and decided that I agree. She had late stage cancer and greeted the world with a smile and a twinkle in her eye. She didn't let it stop her from trying something new and having fun. I am inspired as well.
Hospice shouldn't be a 'bad' word
What do we think when we hear the word 'hospice'? Face it, you probably think 'they are a goner' and wait for a funeral notice. How supportive and positive is that?
I have long suspected that hospices are not as bad as we think. Yes they offer palliative care when patients get to the point where they are no more treatment options. But they offer an alternative to nasty treatments. If you were the patient, how do you want to spend your last days/weeks/months?
Choice A is undergoing aggressive treatment which cause all sorts of nasty side effects resulting in discomfort and unpleasantness and you are either a patient at the hospital or taking frequent/daily trips for addition medical adventures? Choice B is receiving palliative care where your comfort is of utmost importance that is offered either in the privacy of our own home or at a facility which is quiet and full of caring people focusing on pain and your and your family's emotions?
Me I want choice B? I am a wienie. I do not want to die full of tubes and pain. I want to to go quietly (after trying as many options as are available). I do not want pain. I do not want to die alone in a hospital. Let me go write this down before I forget so that when the time comes my wishes are honored. (Damn, I'm turning in to my grandmother who had an 'in case of death' envelope - 2 by the time she died at 96 - full of little pieces of paper with instructions.)
A friend of mine who died from breast cancer a few years ago was receiving hospice care at home. I visited her about a week before she died and brought her take out Pad Thai. She was happy, cheerful, and on oxygen. Her mother and step father were visiting for a few weeks. But while there was no hope for treatment, she spent her last days pain free, living with her family and visiting with friends. That's the way it should be.
Hospices are trying to rebrand themselves in terms of the care they offer. People think of hospices probably just as you do - the goner thing. But hospices offer palliative care for months where people actually live longer and more comfortably than those undergoing aggressive last minute treatment.
One of the problems is doctors are referring people to hospices later and later. There are several theories on this including costs - hospice care costs less than hospital care but that means the hospitals lose the income from the patients. Also, doctors may be hesitant to admit they can no longer help a patient and by referring them to hospice, they are admitting defeat
Me I'll be signing up for hospice care when I need it. But I hope that is many years from now.
I have long suspected that hospices are not as bad as we think. Yes they offer palliative care when patients get to the point where they are no more treatment options. But they offer an alternative to nasty treatments. If you were the patient, how do you want to spend your last days/weeks/months?
Choice A is undergoing aggressive treatment which cause all sorts of nasty side effects resulting in discomfort and unpleasantness and you are either a patient at the hospital or taking frequent/daily trips for addition medical adventures? Choice B is receiving palliative care where your comfort is of utmost importance that is offered either in the privacy of our own home or at a facility which is quiet and full of caring people focusing on pain and your and your family's emotions?
Me I want choice B? I am a wienie. I do not want to die full of tubes and pain. I want to to go quietly (after trying as many options as are available). I do not want pain. I do not want to die alone in a hospital. Let me go write this down before I forget so that when the time comes my wishes are honored. (Damn, I'm turning in to my grandmother who had an 'in case of death' envelope - 2 by the time she died at 96 - full of little pieces of paper with instructions.)
A friend of mine who died from breast cancer a few years ago was receiving hospice care at home. I visited her about a week before she died and brought her take out Pad Thai. She was happy, cheerful, and on oxygen. Her mother and step father were visiting for a few weeks. But while there was no hope for treatment, she spent her last days pain free, living with her family and visiting with friends. That's the way it should be.
Hospices are trying to rebrand themselves in terms of the care they offer. People think of hospices probably just as you do - the goner thing. But hospices offer palliative care for months where people actually live longer and more comfortably than those undergoing aggressive last minute treatment.
One of the problems is doctors are referring people to hospices later and later. There are several theories on this including costs - hospice care costs less than hospital care but that means the hospitals lose the income from the patients. Also, doctors may be hesitant to admit they can no longer help a patient and by referring them to hospice, they are admitting defeat
Me I'll be signing up for hospice care when I need it. But I hope that is many years from now.
They must have a really big crystal ball
The title of an article published by the BBC screams "Cancer Death Rates Set for a Dramatic Fall" by 2030. Yup. I believe it. Not until I see it. Thats 18 years from now. There are still some cancers increasing in incidence. People are still dying from cancer. Cancer rates are increasing in third world countries as well.
They state that there will be a 17% drop in the death rate due to advances in treatment and decreases in smoking rates. They predict that the death rates will drop from 170/100,000 deaths to 142/100,000 deaths. Here is the little chart showing their data in a very simplified form.
So if my numbers are correct (I was not the stellar math student and claim chemo brain so there is so margin for error) while it is exciting that there is an expected 42% drop in ovarian cancer death rates, that really only 6000. This would be 100,000 fewer deaths in the US in 18 years. Or a drop of 5555 less each year. At that rate it will take 86 more years to end cancer deaths in the US. That is too long as far as I am concerned. Most of us can expect to be here in 2030 but probably very very few will be here in 2116.
They state that there will be a 17% drop in the death rate due to advances in treatment and decreases in smoking rates. They predict that the death rates will drop from 170/100,000 deaths to 142/100,000 deaths. Here is the little chart showing their data in a very simplified form.
Let's put some numbers to this to see how it looks on this side of the pond.
| US 2012 Predicted Deaths | %+/- | estimated 2030 death rate | |
| All cancers | 577,190 | -17% | 479,067 |
| Breast cancer | 39,920 | -28% | 28,742 |
| Bowel/Colon | 51,690 | -23% | 39,801 |
| Kidney | 13,570 | -17% | 11,263 |
| Oral | 7,850 | +22% | 9,577 |
| Liver | 20,550 | +39% | 28,565 |
| Lung | 160,340 | -8% | 14,7513 |
| Ovary | 15,550 | -42% | 9,019 |
| Pancreas | 37,390 | -3% | 36,268 |
| Prostate | 28,170 | -16% | 23,664 |
So if my numbers are correct (I was not the stellar math student and claim chemo brain so there is so margin for error) while it is exciting that there is an expected 42% drop in ovarian cancer death rates, that really only 6000. This would be 100,000 fewer deaths in the US in 18 years. Or a drop of 5555 less each year. At that rate it will take 86 more years to end cancer deaths in the US. That is too long as far as I am concerned. Most of us can expect to be here in 2030 but probably very very few will be here in 2116.
End of life medication
In Electionovember (this is not a political post), Massachusetts residents will have the opportunity to vote on End of Life Medication. There are several requirements to the law:
I will vote for this. First of all, I think it should be an option. If you are dying and in pain and there is no hope, why can't you say 'that's it' instead of lingering in pain for a few more weeks? If you disagree, you do not need to make the choice to do it.
The problem with these laws when they try to pass them, is people start saying 'well I would never do that' and people come out of the woodwork saying my neighbor's hair dresser's cousin's friend was given 3 months to live and 20 years later they are still here. Everyone has the right to their own beliefs and this is a law that would allow people to make a difficult decision if they wished.
What if you had something like Parkinson's or Alzheimer's which is irreversible and incurable and you knew you were destined to die over a period of months or years and you could make the decision while you were capable that you wanted to be prescribed end of life medication when you got down to the bitter end? If you know your lot in life is to die a slow and painful death, wouldn't you want a way to avoid the pain if you could? We do not know what is in our future and we could all end up in that circumstance. I think we should be allowed to have that choice if we choose to.
- Must be an MA resident
- Must have been given less than six months to life
- Must be capable of making and communicating medical decisions
- Must voluntarily make a wish to die and make an informed decision.
I will vote for this. First of all, I think it should be an option. If you are dying and in pain and there is no hope, why can't you say 'that's it' instead of lingering in pain for a few more weeks? If you disagree, you do not need to make the choice to do it.
The problem with these laws when they try to pass them, is people start saying 'well I would never do that' and people come out of the woodwork saying my neighbor's hair dresser's cousin's friend was given 3 months to live and 20 years later they are still here. Everyone has the right to their own beliefs and this is a law that would allow people to make a difficult decision if they wished.
What if you had something like Parkinson's or Alzheimer's which is irreversible and incurable and you knew you were destined to die over a period of months or years and you could make the decision while you were capable that you wanted to be prescribed end of life medication when you got down to the bitter end? If you know your lot in life is to die a slow and painful death, wouldn't you want a way to avoid the pain if you could? We do not know what is in our future and we could all end up in that circumstance. I think we should be allowed to have that choice if we choose to.
Planning ahead
For a mere $20 you can purchase an ObitKit and write your own obituary. Its the latest thing in the American rate race, keeping up with the Jones's. I mean why not? Your funeral is the biggest party of your life and you don't get to attend. If you write your own obituary you can advertise yourself and establish your brand for eternity (sorry my inner marketing person kicked in). You won't need to be the family member who brought the disgusting fruit cake to Christmas dinner for 20 years, you can become the family member who went on exotic vacations and lived life to the fullest.
It actually makes sense. What do you want people to remember you by? What they can remember or what you can remember? My family is a bunch of planners. My grandmother prepaid for her funeral (and got a really good deal because she didn't need it for 20 years), drafted her death notice, and planned many details. It was much easier on the rest of us. And we knew what she wanted in the paper.
Think about it, if you died tomorrow (not that you are but its the principle here - work with me), what would your family write about you? That you didn't go grocery shopping with reusable bags or were always the one who left the iron plugged in when you went on vacation? Or had really bad dandruff (okay I'm stretching here). But this is your chance to leave things your way.
I think of it as a logical extension of your medical proxy, next comes the funeral and the death notice. Start planning. Make it all about you. Just make sure the wake is held while you still can attend.
It actually makes sense. What do you want people to remember you by? What they can remember or what you can remember? My family is a bunch of planners. My grandmother prepaid for her funeral (and got a really good deal because she didn't need it for 20 years), drafted her death notice, and planned many details. It was much easier on the rest of us. And we knew what she wanted in the paper.
Think about it, if you died tomorrow (not that you are but its the principle here - work with me), what would your family write about you? That you didn't go grocery shopping with reusable bags or were always the one who left the iron plugged in when you went on vacation? Or had really bad dandruff (okay I'm stretching here). But this is your chance to leave things your way.
I think of it as a logical extension of your medical proxy, next comes the funeral and the death notice. Start planning. Make it all about you. Just make sure the wake is held while you still can attend.
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