continued from chapter 6: part 4
Now we come to doctor number four. Between doctors two and four we are talking a matter of a few weeks from the time I drove Hal that first time to the Emergency Department until he was discharged from the hospital after his surgery.
I’m still fuzzy on this but I think this is what happened: the surgeon, Doctor Beam was about to go on vacation and the oncologist he was planning to refer Hal to was on vacation so in the interim Hal was to be monitored by Doctor Roberts, another surgeon. This turned out to be the darkest part of those first weeks.
On the day we met Doctor Roberts, we were ushered into the inevitably chilly, tiny examining room. Hal sat on the table and I perched on one chair, clutching our coats and other paraphernalia.
Enter the doctor, a medium size guy with trim body and a springy walk.
His first words were, “So, Mister Tennant, what can I do for you?”
Shucks, doctor, we had hoped you’d studied the report in your hand and would give us a little guidance.
Hal politely went through what had happened and that he was ready now for whatever sort of treatment he should be having. I made some comment about the cancer mestasisizing into the liver and worried about Hal’s chances, and this man, now sitting in the chair with his feet up on the equipment table between us, put his hands behind his head and said flatly, “Well, chances are he’ll be dead of cancer of the liver within two years.”
Of all the things that had happened in the past months, this was the lowest point. Neither one of us behaved badly; we heard the doctor out, he said he would continue monitoring and his nurse set another appointment for three week’s time. We left the hospital and got into the car. We just sat there looking at one another. We took a collective deep breath.
“Hey,” I said, “The hell with this barbarian. Let’s go have a super lunch.”
One thing you can count on is that I will think of food in a crisis.
We drove to our favorite Italian restaurant and were seated in a fairly secluded spot. We shared a bottle of wine and drank a toast to our future. We both cried a bit, then the wine did its job and we laughed and actually had a good time in that warm spot surrounded by lively, anonymous people. Afterward, we sensibly went home and made love.
continued in chapter 6: part 6
Tuesday, July 31, 2007
Monday, July 30, 2007
chapter 6:part 4 Study Your Doctor
Continued from Chapter 6: part 3
We were shuffled around a lot before we actually met the Oncologist at Princess Margaret hospital.
First was Heather, our family doctor who struggled to find the cause of the pain. Was Hal behaving too stoically during his visits to her office? I don’t know because I wasn’t there, but from doctor number two and on, I was like his Siamese twin.
Doctor number two, Dr. Kroll the Gastroenterologist who admitted Hal from Emergency, was a pleasant, formal man who, like every doctor I met, worked long hours, but the person we saw most at this stage was the resident, Dana, and she was forthright. She drew a diagram of the intestines and showed where they thought the problem was. If we had asked her then what they might find during exploratory surgery, I believe she would have told us. We figured then that we had enough problems on our plate and settled for the diagram and the vague notion that this might be Crohn’s disease.
We got used to a certain ritual: when the chain of command altered and Hal was turned over to the next specialist, the previous doctor disappeared. We saw Dana at an elevator shortly after the surgeon took over and she looked blankly through us. We no longer were a part of her work schedule.
Then came number three, Doctor Beam, the surgeon who performed the operation and he was the most positive person we encountered; a person with that attitude is worth his weight in rubies. Because of his positive strength we raised our expectations about our needs and Hal’s rights. Because he was a surgeon, though, he wasn’t considered to be the person to take Hal further. He was the exception to the out-of-sight-out-of-mind rule; he never spoke in terms of writing us off and he maintained contact through Hal’s illness, having him come in every three months for a chat and a check-up. We appreciated those chats more than I can express.
Although the Oncologist took time to explain things to us, we sometimes left the clinic feeling upset and Doctor Beam, one step removed from our battle, had a way of soothing us and making everything seem clear, hopeful and reasonable.
continued in chapter 6: part 5
We were shuffled around a lot before we actually met the Oncologist at Princess Margaret hospital.
First was Heather, our family doctor who struggled to find the cause of the pain. Was Hal behaving too stoically during his visits to her office? I don’t know because I wasn’t there, but from doctor number two and on, I was like his Siamese twin.
Doctor number two, Dr. Kroll the Gastroenterologist who admitted Hal from Emergency, was a pleasant, formal man who, like every doctor I met, worked long hours, but the person we saw most at this stage was the resident, Dana, and she was forthright. She drew a diagram of the intestines and showed where they thought the problem was. If we had asked her then what they might find during exploratory surgery, I believe she would have told us. We figured then that we had enough problems on our plate and settled for the diagram and the vague notion that this might be Crohn’s disease.
We got used to a certain ritual: when the chain of command altered and Hal was turned over to the next specialist, the previous doctor disappeared. We saw Dana at an elevator shortly after the surgeon took over and she looked blankly through us. We no longer were a part of her work schedule.
Then came number three, Doctor Beam, the surgeon who performed the operation and he was the most positive person we encountered; a person with that attitude is worth his weight in rubies. Because of his positive strength we raised our expectations about our needs and Hal’s rights. Because he was a surgeon, though, he wasn’t considered to be the person to take Hal further. He was the exception to the out-of-sight-out-of-mind rule; he never spoke in terms of writing us off and he maintained contact through Hal’s illness, having him come in every three months for a chat and a check-up. We appreciated those chats more than I can express.
Although the Oncologist took time to explain things to us, we sometimes left the clinic feeling upset and Doctor Beam, one step removed from our battle, had a way of soothing us and making everything seem clear, hopeful and reasonable.
continued in chapter 6: part 5
Friday, July 27, 2007
chapter 6: part 3 Study your Doctor
continued from Chapter 6: part 2
Let’s take the worst- case doctor/patient scenario and say that the two of you can’t make a compatible fit, either in personality or confidence and you still want a referral. You have been doing all that research in chapter five and this is just a minor setback.
If you are sure in your mind that this doctor is one you simply cannot relate to or trust completely then take immediate steps to make a change.
You don’t have to change your name, leave town and start again.
Ask for a second opinion, and then call the family doctor or a medical friend if you have one. Do some auditioning. This takes considerable tact. It takes some time, but if you are making your selection from say, the same clinic, your file goes from doctor to doctor so you’re not starting from scratch.
Fiona told me of her experience on Sean’s behalf when they first began seeing his specialist at a cancer clinic in a general hospital. It was a shabby, drafty place and most patients were vocal, wailing and breast beating. Sean was an uptight, private person and this display of overt emotion upset him as did the dingy setting. Fiona knew this wasn’t going to work well for him. She got on the phone and called everyone who might know of a specialist who might be right for her Sean. She kept hearing the same name and believed this might be the right one. He worked from a hospital she was familiar with.
They arranged their appointment and when the doctor asked why they had come, Sean told him bluntly and honestly that he didn’t have confidence in either his present doctor or that clinic. Fiona sensed that the specialist was pigeonholing Sean as a difficult patient and he casually asked them to wait while he went away to review Sean’s files. She knew he was going to turn them down. She turned to Sean and said, “Look, he isn’t going to take your case; he believes you might be a trouble maker and he doesn’t need the aggravation. It’s your job to convince him that you’re a good guy. You may have to beg, but do what you have to do to change his mind.”
And he did.
Continued in chapter 6: part 4
Let’s take the worst- case doctor/patient scenario and say that the two of you can’t make a compatible fit, either in personality or confidence and you still want a referral. You have been doing all that research in chapter five and this is just a minor setback.
If you are sure in your mind that this doctor is one you simply cannot relate to or trust completely then take immediate steps to make a change.
You don’t have to change your name, leave town and start again.
Ask for a second opinion, and then call the family doctor or a medical friend if you have one. Do some auditioning. This takes considerable tact. It takes some time, but if you are making your selection from say, the same clinic, your file goes from doctor to doctor so you’re not starting from scratch.
Fiona told me of her experience on Sean’s behalf when they first began seeing his specialist at a cancer clinic in a general hospital. It was a shabby, drafty place and most patients were vocal, wailing and breast beating. Sean was an uptight, private person and this display of overt emotion upset him as did the dingy setting. Fiona knew this wasn’t going to work well for him. She got on the phone and called everyone who might know of a specialist who might be right for her Sean. She kept hearing the same name and believed this might be the right one. He worked from a hospital she was familiar with.
They arranged their appointment and when the doctor asked why they had come, Sean told him bluntly and honestly that he didn’t have confidence in either his present doctor or that clinic. Fiona sensed that the specialist was pigeonholing Sean as a difficult patient and he casually asked them to wait while he went away to review Sean’s files. She knew he was going to turn them down. She turned to Sean and said, “Look, he isn’t going to take your case; he believes you might be a trouble maker and he doesn’t need the aggravation. It’s your job to convince him that you’re a good guy. You may have to beg, but do what you have to do to change his mind.”
And he did.
Continued in chapter 6: part 4
Thursday, July 26, 2007
chapter 6: part 2 Study Your doctor
continued from chapter 6: part 1
You know the kinds of people you’re most comfortable with. Does it matter if your doctor is an autocrat and you are much more laid back? Not especially, as long as you feel the fundamental needs are being met. What do you care about? Do you want to know every change in your condition or would you prefer to leave the worrying to the doctor? We’ll take it as a given that you want to know you are in the hands of a total pro who will give you the best. Can you handle a starchy manner? If you are a formal personality, can you manage if the doctor establishes a first-name relationship?
Test your doctor as you go along; what makes him laugh? Is he controlling or does he keep you abreast of your treatment? If he walks into the room looking grim, do you infer that he is bringing you bad news about your condition? If this crosses, you mind, ask him.
For the sake of argument, let’s say that the specialist assigned to you has, in your opinion, the personality of a horses’ ass. You will never like him but you will probably respect him and you’re convinced he will give you the best care.
Figure out how you’ll handle your feelings; social skills don’t appear to be a prerequisite at medical school and generally you get lucky, but if your doctor’s attitude falls between the cracks, give a little there because this person is your best shot at recovery.
It will be up to you to adapt to his personality.
What might you do to establish a better footing? Well, the truth is a good idea but be gentle. You might say, “Doctor, I have a casual personality and you are formal. I want to work with you because I am convinced that you are the one who will give me the best chance. I am an up-front person, I expect the whole truth and good information about every step of my treatment but leave me a window of hope.”
Conversely, if you don’t want a blow-by-blow account, be clear that you are leaving the treatment to him, that you will ask when you want an update, and please don’t volunteer information unless you ask.
It is important to know that these doctors probably would never be able to pick you out of a line -up, so find your middle ground.
continued in chapter 6: part 3
You know the kinds of people you’re most comfortable with. Does it matter if your doctor is an autocrat and you are much more laid back? Not especially, as long as you feel the fundamental needs are being met. What do you care about? Do you want to know every change in your condition or would you prefer to leave the worrying to the doctor? We’ll take it as a given that you want to know you are in the hands of a total pro who will give you the best. Can you handle a starchy manner? If you are a formal personality, can you manage if the doctor establishes a first-name relationship?
Test your doctor as you go along; what makes him laugh? Is he controlling or does he keep you abreast of your treatment? If he walks into the room looking grim, do you infer that he is bringing you bad news about your condition? If this crosses, you mind, ask him.
For the sake of argument, let’s say that the specialist assigned to you has, in your opinion, the personality of a horses’ ass. You will never like him but you will probably respect him and you’re convinced he will give you the best care.
Figure out how you’ll handle your feelings; social skills don’t appear to be a prerequisite at medical school and generally you get lucky, but if your doctor’s attitude falls between the cracks, give a little there because this person is your best shot at recovery.
It will be up to you to adapt to his personality.
What might you do to establish a better footing? Well, the truth is a good idea but be gentle. You might say, “Doctor, I have a casual personality and you are formal. I want to work with you because I am convinced that you are the one who will give me the best chance. I am an up-front person, I expect the whole truth and good information about every step of my treatment but leave me a window of hope.”
Conversely, if you don’t want a blow-by-blow account, be clear that you are leaving the treatment to him, that you will ask when you want an update, and please don’t volunteer information unless you ask.
It is important to know that these doctors probably would never be able to pick you out of a line -up, so find your middle ground.
continued in chapter 6: part 3
Wednesday, July 25, 2007
chapter 6: part 1 Study Your Doctor
Continued from chapter 5: part 7
My job was to persuade Hal to consider himself to be fifty- percent responsible for his recovery. His attitude and sense of purpose were the foundation of his rebuilding program. The medical profession shoulders the other half of this fight and since they’re going to be partners, choose your co-workers wisely.
You need a doctor who is thoroughly acquainted with your particular kind of cancer. This person is a human being like you, has other patients like you, struggles to balance a family life and work and somehow has to make you feel special and that you’re getting the best of what he has to give.
An important priority for me was that Hal’s doctor be flexible enough to permit me to remain in the examining room, always. I knew that Hal needed me and relied on me to be his second ears, especially important if a patient is on pain medication and may not always be sure of what was said.
This wasn’t a problem and you should be able to work this out if you play by the unwritten ground rules: keep quiet, stay out of the way and keep your emotions tightly reined in. This is your partner’s appointment and the focus must be clearly and finally on his health and problems. The rewards for me were boundless. I didn’t have to rely on second-hand information, which could have been hopelessly garbled when Hal began taking painkillers.
This kind of togetherness isn’t important to everyone, as is the case with my friends Beryl and Ron. She had always struck me as the kind of person who could take charge of anything anywhere, but she wasn’t like that at all. Ron took full control of the arrangements and appointments, from the start. She drove with him to his appointments and sat in the waiting room. This suited them. She said later, “Frankly, if I’d wanted to be there with him, Ron would have been demoralized.”
You owe your doctor clear, concise questions. If you the patient feel rotten, spend a few minutes beforehand to work out in your head what the problem is or where the problem seems to be. Pinpoint the area and the sensation. You will be expected to follow instructions about medication and diet and whatever else is necessary to help make you well or at the least, comfortable.
When you first meet the doctor who will be seeing you through this, your first instinct is to be damned grateful that someone is looking after you. Hold that feeling but also be clear about your needs. Your best instincts tell you that this person is going to be a part of your life for a long time, and it would be nice if the two of you were compatible. It is vital that you trust him.
continued in chapter 6; part 2
My job was to persuade Hal to consider himself to be fifty- percent responsible for his recovery. His attitude and sense of purpose were the foundation of his rebuilding program. The medical profession shoulders the other half of this fight and since they’re going to be partners, choose your co-workers wisely.
You need a doctor who is thoroughly acquainted with your particular kind of cancer. This person is a human being like you, has other patients like you, struggles to balance a family life and work and somehow has to make you feel special and that you’re getting the best of what he has to give.
An important priority for me was that Hal’s doctor be flexible enough to permit me to remain in the examining room, always. I knew that Hal needed me and relied on me to be his second ears, especially important if a patient is on pain medication and may not always be sure of what was said.
This wasn’t a problem and you should be able to work this out if you play by the unwritten ground rules: keep quiet, stay out of the way and keep your emotions tightly reined in. This is your partner’s appointment and the focus must be clearly and finally on his health and problems. The rewards for me were boundless. I didn’t have to rely on second-hand information, which could have been hopelessly garbled when Hal began taking painkillers.
This kind of togetherness isn’t important to everyone, as is the case with my friends Beryl and Ron. She had always struck me as the kind of person who could take charge of anything anywhere, but she wasn’t like that at all. Ron took full control of the arrangements and appointments, from the start. She drove with him to his appointments and sat in the waiting room. This suited them. She said later, “Frankly, if I’d wanted to be there with him, Ron would have been demoralized.”
You owe your doctor clear, concise questions. If you the patient feel rotten, spend a few minutes beforehand to work out in your head what the problem is or where the problem seems to be. Pinpoint the area and the sensation. You will be expected to follow instructions about medication and diet and whatever else is necessary to help make you well or at the least, comfortable.
When you first meet the doctor who will be seeing you through this, your first instinct is to be damned grateful that someone is looking after you. Hold that feeling but also be clear about your needs. Your best instincts tell you that this person is going to be a part of your life for a long time, and it would be nice if the two of you were compatible. It is vital that you trust him.
continued in chapter 6; part 2
Tuesday, July 24, 2007
chapter 5: part 7
continued from chapter 5: part 6
When I questioned the women from the support groups whose mates had cancer, I was surprised that many of them hadn't been present when their spouses met the specialist for the first time. Either they had jobs or their spouse insisted on being independent about this. For my sake, I am glad Hal accepted my presence. We all know that you can come from the doctors office believing you remember all you were told, but often that isn’t the case.
It was clear in our minds that Hal would combine any medical treatment with self-help imagery and group therapy and relaxation exercises and we left the casual drop-in group to join a group run by a psychologist in the hospital. This one was money well spent because they permitted the caregiver to participate. Originally it was set up for the patients only but the facilitators claim the caregivers showed up the first night and refused to be left out. This was excellent for us both.
We thought a lot about the doctors’ view of when to begin treatment. The doctor's credo was, "If it ain’t broke don't fix it." Well, it wasn't showing signs at the time, but it was broke. Now I realize they were leaving Hal alone while he felt well to enjoy his life.
We opted to stay away from macrobiotic diets that patients we've met swear by, and the two I knew personally were walking promotionals for it. They shuddered at the taste and blandness but believed it was aiding them. Hal chose not to attempt that because he liked his evening rum and roast beef didn't make the diet list. You have to be totally committed to anything to make it work, and no matter how much you want to succeed, you have to know yourself and your limitations.
Faith healers were not a serious consideration for Hal. He never claimed a spiritual life and to the end, he never wavered there.
This was the way we eased into our decision about Hal's treatment. We would follow the directives of the Oncologist and we would follow it faithfully. We would also practice positive imagery for self-healing, at home and within this group setting.
We could have been more aggressive before Hal was diagnosed and before he began treatment, but we weren't and I know we did what we believed was right and I can live with that.
I still get shivers when I meet people who figure the answer lies on the shelves of the health food store or in the third floor walk up where this magnetic person has all the answers, for a hefty price. This is a tough disease. Do your homework, get the right doctor for you and then commit yourself for the rest of your life.
May it be a long one.
Monday, July 23, 2007
chapter 5: part 6
continued from chapter 5: part 5
Once you commit to your treatment, you should be prepared to go the distance without worrying about what you might have done. You have agreed to this course of treatment based on your research, and now you can get to work on keeping your mind and attitude in top working order.
You have studied and questioned your doctor carefully and you believe through your research that this person is professional and knowledgeable and the choice of treatment for you is the best course to take.
We had a pretty clear understanding of the way the Oncologist wanted to manage Hal's cancer. Still, we had to be a part of that decision making process and so should you. We accepted the doctor's views immediately, but we had done our homework and were aware of many of the options open to us; we also had an abiding faith in the cancer hospital and clinic, based on its solid reputation. We also hope it would attract the most qualified people on staff.
The doctor didn't plan to begin treatment until Hal showed signs of distress and this gave us the opportunity to re-examine the information we had been gathering about various treatments.
We knew his cancer was serious and we had little reason to doubt that no matter what he did he would die of it. That doesn't mean we intended to passively accept that, we intended to fight the disease as hard as we possibly could and we did. Once we met the Oncologist and committed ourselves to his management of the disease we never discussed Hal's life span again and we turned our thoughts totally to today.
Cancer is not a straightforward disease; there is that cell splitting and metastasizing and comparing one case against another re treatment is tough. We knew that the chemotherapy proposed for Hal was his best bet. His was called 5-FU (eff you) or more formally 5-Fluorouracil.I always thought the name was ironically apt. He was vain enough to rejoice that this treatment seldom causes much hair loss and he kept his thatch intact. He would suffer from nausea and mouth sores and weight loss.
We felt a sense of being protected at the hospital cancer clinic and that was the main reason we chose not to try the experimental drug offered to us. From what we'd read one drug wasn't going to rid the body of cancer. Never at any time were we tempted to try any of the untested, unproved drugs, clinics and "doctors" who grow rich preying on people searching for answers.
My advice is to choose based on all the facts and information you can gather from reliable sources and then keep your focus on the present.
It was always clear in our minds that Hal would combine any medical treatment with self-help imagery and group therapy and relaxation exercises and we left the casual drop-in group to join a group run by a psychologist in the hospital. This one was money well spent because they permitted the caregiver to participate. Originally it was set up for the patients only but the facilitators claim the caregivers showed up the first night and refused to be left out. This was excellent for us both.
We thought a lot about the doctors’ view of when to begin treatment. The doctor's credo was, "If it ain’t broke don't fix it." Well, it wasn't showing signs at the time, but it was broke. Now I realize they were leaving Hal alone while he felt well to enjoy his life.
We opted to stay away from macrobiotic diets that patients we've met swear by, and the two I knew personally were walking promotionals for it. They shuddered at the taste and blandness but believed it was aiding them. Hal chose not to attempt that because he liked his evening rum and roast beef didn't make the diet list. You have to be totally committed to anything to make it work, and no matter how much you want to succeed, you have to know yourself and your limitations.
Faith healers were not a serious consideration for Hal. He never claimed a spiritual life and to the end, he never wavered there.
This was the way we fell into our decision about Hal's treatment. We would follow the directives of the Oncologist and we would follow it faithfully. We would also practice positive imagery for self-healing and we would do this in the privacy of group leading.
If you did this again, what would you change?
We could have been more aggressive before Hal was diagnosed and before he began treatment, but we weren't and I know we did what we believed was right and I can live with that. I still get the shivers when I meet people who figure the answer lies on the shelves of the health food store or in the third floor walkup where this magnetic person has all the answers, for a hefty price. This is a tough disease. Do your homework, get the right doctor for you and then commit yourself for the rest of your life. May it be a long one.
continued in chapter 5; part 7
Friday, July 20, 2007
chapter 5: part 5
continued from chapter 5: part 4
Here is a sampling of questions you will probably want to ask your doctor or oncologist (cancer specialist)on your first visit, although this doesn't let you off the hook with your research. Compare what you're learned through reading with what the doctor replies. If the doctor's answers are confusing, have them clarified.
Most of these questions will be brought up by the doctor and you won’t need to ask but you'll feel better if you are over-prepared..
1: WHAT ARE THE USUAL treatments for my kind of cancer? Please describe in detail.
You may or may not want to ask this question: what is the survival rate with this kind of treatment? How long has this treatment been used?
2: WHY DID YOU CHOOSE this treatment over any others? What side effects can I expect and are there ways to combat them?
3: ARE THERE ANY alternative treatments in the works that you find encouraging?
4: I'VE BEEN READING about a treatment called (X) and it sounds promising. Why aren't you trying this?
5: HOW DO YOU TELL if my cancer has spread?
6: I WANT TO TALK TO SOME PATIENTS who are receiving this same treatment you are advising. How do I do this?
7: I UNDERSTAND EACH CANCER is identified by a type and stage. What is mine? What does that mean?
8: WHAT ARE THE TREATMENT RISKS in my case? I've heard that some people die from the after effects of the treatment rather than the disease.
9: WHAT ARE the optimal results I might expect from this treatment? How often have you seen this happen?
10: HOW OFTEN WILL my condition be monitored?
11: WHAT ARE YOUR OVERALL PLANS for my treatment based on what you see now?
12: WHO DO I CALL if I get into medical problems outside of clinic hours?
13: I MIGHT WANT to get a second opinion. Do you have any objection?
14: IF I OPT FOR a non-traditional treatment at this early stage, can I return to your care at a later time, if I feel it necessary?
There. You have taken matters into your own hands and you know a lot more about your disease. and chances are you feel more confident.
Now you’re ready to make your decision. You are armed with the right questions and you’ve noted the answers.
Thursday, July 19, 2007
chapter 5: part 4
continued from chapter 5: part 3
During our research phase we investigated a controversial private clinic in Toronto which specialized in deep heat treatment combined with drug therapy. This was the clinic used by Mary, our first contact from our first support group. She was alive and well two years after starting treatment, receiving regular checkups with no traces of cancer showing.
Other stories were not so compelling.
My thought is that if you believe it will work then it will, at least for a while. The lack of scientific data coupled with the fact that the expensive treatments were not covered by medical insurance led us away from this one.
We found countless books promoting positive thinking and imagery as self- help tools to be combined with regular medical treatment. There are video cassettes on relaxation exercises and deep breathing and they are certainly worth investigating.
I went to the library to read up on colon cancer, but what I found lacking in the material was the kinds of treatment available. It would have been so much easier if computers were the force they are today.
I read much later that the conventional treatment for Hal's kind of cancer has remained virtually the same for over twenty years and so has the survival rate. We might have been more aggressive about trying that experimental drug had we known that, but what we did was based on what we knew.
Yes, it is a confusing time but the good news is by reading and asking questions, you’ll make informed choices. The bad news is that there aren’t any guarantees. This is where your homework comes in. What are the statistics for remission for your particular kind of cancer using traditional treatment? If you want to try something off the mainstream, check and double- check the stats about their remissions. Those numbers on the printed page aren't necessarily so.
All this time there is one truth you may have been circling without actually confronting it. When you are armed with the facts and figures, you will learn one of two things; either your cancer is one of the generally successful ones or your chances aren't good. We knew Hal's chances were slim but we preferred to know.
Make sure you know what your tolerance level is and make sure those around you are clear about that. If you don't want further background information, say so. You have to be clear because people may make false assumptions about your desires. You can still get information about treatments and it will be difficult to avoid some kind of message about your chances but if you really don't want to know the worst, ask a medical person to suggest some reading material for you and tell them what it is you want to investigate, and what you don't want to know. And remember, no matter what the statistics reveal , your soul will hold hope.
continued in chapter 5: part 5Wednesday, July 18, 2007
chapter 5: part 3
continued from chapter 5: part 2
The most intriguing information about cancer treatment came from our friend Jack. He called to say that his friend Harry ran a small independent pharmaceutical lab holding a patent on a drug currently being tested by a renowned doctor in Montreal. Hal talked to Harry, who was wildly enthusiastic about its potential. The major asset of this drug was that it was considered to be non- toxic, which means it won’t harm normal body cells and it was said to boost the body’s natural defenses.
The drug had been developed by a veterinarian who had satisfactory results injecting it into animals with tumors.
Harry said that one doctor in our city was permitted to inject this drug, once a week for five weeks and there were absolutely no after effects. The one criterion was that the tumors must be small so that they could be eliminated through the body. As far as we knew, Hal’s tumors would qualify for size and Harry offered to make the drug available to Hal at no charge.
I phoned a medical acquaintance at the hospital where I had previously worked to ask her what she knew about this drug; she checked with the Pharmacy Department and called back to say that while it was still in the early testing stages, it was being tested in Montreal on terminally ill patients.
I asked her, “ Look, I know the final decision is up to us, but if you had colon cancer with traces in the liver, what would you do?”
Her answer was, “Well, what have you got to lose?”
She was right. The appeal of a drug that doesn’t cut, burn and poison was huge, but what we were most afraid of, if we opted for this treatment, was that we would be out of touch with the cancer hospital and the oncologist we would soon meet. Somewhere I read a slogan I never forgot—“Not to decide is to decide.” Ultimately, we chose not to follow up on this treatment and years later when I searched for an update, it hasn’t proved itself.
Keep in mind that when a breakthrough for your cancer comes, your oncologist will be at the head of the line to get help for you.
Two of my new pals from a support group were Ellen and Curt. They had the most difficult time because there weren’t facilities equipped for Curt where they lived in cottage country. They had to endure a long drive into the city for his chemo and stay with their daughter while this was being done. Then there was the long drive home, when he would not be feeling good.
Ellen heard later that another friend with the same kind of cancer was given his chemo by capsule, and she feels bitter that she had never heard of this option.
This is where you need the information up front. Presumably a capsule was not right for him, but then again, could it have been?
They had been going to a hospital in the west end of the city, which meant they had to drive in from the country and right across the city. Added to this tiring fact, Ellen slowly began to realize she Curt had a doctor who had limited vision about cancer treatment and she finally asked that Ken be transferred to Princess Margaret, the cancer hospital and that was done.
She then felt she was getting him the best help possible.
continued in chapter 5: part 4
Tuesday, July 17, 2007
chapter 5:: part 2
continued from chapter 5; part 1
Some treatments work better than others and many forms of cancer can be arrested for the rest of a natural lifespan. The reason I am stressing that you must get a lot of information on your own is that you will feel less helpless, more in control of your life. A happy outcome is that in your search you will meet people who are keeping their disease at bay while getting in a lot of living.
We were in limbo for a while when Hal was discharged from the hospital, the surgeon and oncologist were away and we were on our own. This was the ideal time for us to do our research. Friends, friends once removed, and family members acted as messengers, bringing word of various treatments. It was usually about a person no one knew personally who had conquered the tumors by non-traditional means such as faith healing, macrobiotic diet combined with mega vitamins, gurus, Laetrile, other drugs you’ve never heard of, coffee enemas, green algae and the list goes on. You will be urged to find out more.
This is good. Tiring and confusing but good. Adding to the confusion is that if you worked your way through even the nuttiest treatments, chances are you would locate someone who took treatment and appears healthy. My skeptical soul tells me that you could probably feel good for a while if you believed whole-heartedly that sunflower seeds dipped in molasses would do the trick. Some people opt for a combination of things while taking accepted treatment. We didn’t write anything off at first. We wanted to keep open minds while we sifted through the information.
The danger with unproven cancer therapies is that you might veto accepted medical treatment for your disease.
You’ll hear reports of wondrous results in far off country clinics out of the reach of Medicare, and if you manage to liquidate everything you own, you might be able to get there for your treatment. From what I’ve observed these treatments prove worthless, but desperate people still seek them out.
At the same time you are hearing these hopeful stories, pick up a newspaper any given week and you’ll read about a new treatment getting good results but still in the testing stage. This will motivate you to keep a positive outlook while you prepare for your treatment.
continued in chapter 5: part 3Monday, July 16, 2007
chapter 5: part 1 Do Your Research
Continued from chapter 4: part5
Think back to the last time you bought a car. Whether new or used, you probably did a little research and some road testing.
Think back to the last time you bought a car. Whether new or used, you probably did a little research and some road testing.
Well now, try being as meticulous about your cancer treatment. This suggestion might seem obvious but in the first stages of panic you might give way to despair without crediting your ability to study and analyze the situation and make good decisions based on what you’ve learned.
This is your life and it’s worth your while to put at least as much effort into researching your illness as you exerted in researching your last car purchase.
You know the name of your kind of cancer but what else do you know about it? Your doctor may have drawn a diagram and quoted some statistics about your chances of overcoming this, but go after more information on your own. This is the time to learn exactly the kind of treatments available and then to narrow down which one is right for you. Yes, your doctor will have an opinion but it’s your responsibility to understand the alternatives and double-check the doctor’s choice.
At first we vacillated between wanting to know everything or nothing. This passed quickly and we soon thirsted for every scrap of information.
When the doctor explained what Hal had and what probably would be done, we clung desperately to every word he uttered without crediting ourselves with the ability to get some facts on our own. Don’t bet your life on the opinion of one person; you must agree with what is being done. Since you’re all in this together, double-check the facts.
If your anxiety is compounded by memories of movies of a doctor solemnly saying, “There’s no time to lose,” Keep in mind that the unspoken part of that sentence is, “Unless it’s Friday,” when we all know that business everywhere, including hospitals grinds to a halt until Monday morning. Even wackier rules apply during summer vacation season, so give yourself time. Take a deep breath and marshal your questions.
When we were at this stage, computers weren’t the force they are now, there was no Internet and I had to rely on library research. It took longer but I found what I needed.
Friday, July 13, 2007
chapter 4: part 5
continued from chapter 4: part 4
We had people viewing the place on Christmas Eve and Boxing Day and finally we sold our lovely old house on New Years Eve, for a mid-March closing. We had had enough sense not to make any conditional offers on another house until ours was safely sold and then we scoured the neighborhoods we had previously scouted and quickly bought a small house for slightly more than we had agreed to pay, but it was a good compromise. We found three bedrooms, workshop space and a fine fireplace in the family room, and we promised ourselves we would set to work to pack soon.
Do I have any regrets about this early re-shaping of our lives after cancer entered into it? Only one. We had talked about trips we would still like to take. We had traveled in various parts of Europe, but we still had to see Venice or take the Orient Express to Paris or drive through England and Scotland.
Hal had often talked of spending a week or so in New Orleans. He was a jazz buff and this was a long time dream of his. We never made it. At first when he recovered and felt fine, his workload was constant and by the time he began to feel ill, it was just too late to try it. It’s too bad we didn’t just take off as soon as he felt well after the first surgery. We thought we had time and we were wrong. We also thought that since we didn’t know how long he could work, or would want to work, we should shore up our savings. The hell with the expense; he would have loved New Orleans.
Writers generally love their work, and they have to, because there must be easier ways to find job satisfaction. Sadly, many people feel trapped in their jobs and there isn’t much they could do about it, with mortgages and orthodontists expenses to juggle.
Members of our support groups didn’t make any radical job changes, and chances are this may not be a good time to dump yours, but dealing with it may be easier when you know that you have a much larger job on your hands, staying alive and well. I promise you that your attitude about your job can change; you may not be so concerned about who gets the promotions. Just be glad you have a salary to carry you and appreciate the co-workers who genuinely care about you and your health. Another bonus us the fact that you can concentrate your attention on your work and the people you work with. It takes you outside yourself.
There is one exercise that comes up often in any sort of group situation and it’s worth repeating here for you to try. If you don’t take the time to sit down and do this, you’re cheating yourself out of something important.
Sit in a comfortable chair in a peaceful room and settle in for some quiet thought. Place a notepad and pen close by. If you can’t blank out distractions like fighting children or a loudly clicking clock, then incorporate them into your contemplation.
Here we go. Suppose you have just learned through divine intervention that today is the last day of your life. You feel well; you have plenty of money and no big worries or pressing obligations. What do you want to do with this day? Waste this day and what do you have left? Set yourself a time limit for this; take too much time and you’ll get bogged down with the hang-ups that prevented you from taking these positive steps in the first place.
Keep to your time limit but make sure your decisions are satisfying. I said satisfying, though not necessarily practical. It’s your dream. Write it in point form. Now we move on.
Next, you‘ve received news that you have one week to live. What are you going to do with that week? Next, stretch your lifetime to one month and write down your decisions. You’ve got the hang of it by now.
Check over your point form notes. Do you see a pattern emerging? You might be surprised how little you would change, or have you opted for massive change? Don’t leave things any longer. When you do get around to dying, you don’t want to review your life and find yourself full of regret for the things you didn’t do well, or just plain didn’t do. This can be done no matter what outside distractions are present. In the process you’ll improve your ability to concentrate.
This isn’t a frivolous exercise; it will tell you a lot about yourself.
Don’t let another day go by with lingering regrets for something you can fix. Make your life count. If your quiet exercises push some excess baggage to the forefront deal with it and get it out of the way. You can’t be one hundred percent about your life because it’s like a tapestry that’s never entirely finished. Just tidy up those loose ends.
This is the beginning of your new life plan.
continued in chapter 5: part 1
We had people viewing the place on Christmas Eve and Boxing Day and finally we sold our lovely old house on New Years Eve, for a mid-March closing. We had had enough sense not to make any conditional offers on another house until ours was safely sold and then we scoured the neighborhoods we had previously scouted and quickly bought a small house for slightly more than we had agreed to pay, but it was a good compromise. We found three bedrooms, workshop space and a fine fireplace in the family room, and we promised ourselves we would set to work to pack soon.
Do I have any regrets about this early re-shaping of our lives after cancer entered into it? Only one. We had talked about trips we would still like to take. We had traveled in various parts of Europe, but we still had to see Venice or take the Orient Express to Paris or drive through England and Scotland.
Hal had often talked of spending a week or so in New Orleans. He was a jazz buff and this was a long time dream of his. We never made it. At first when he recovered and felt fine, his workload was constant and by the time he began to feel ill, it was just too late to try it. It’s too bad we didn’t just take off as soon as he felt well after the first surgery. We thought we had time and we were wrong. We also thought that since we didn’t know how long he could work, or would want to work, we should shore up our savings. The hell with the expense; he would have loved New Orleans.
Writers generally love their work, and they have to, because there must be easier ways to find job satisfaction. Sadly, many people feel trapped in their jobs and there isn’t much they could do about it, with mortgages and orthodontists expenses to juggle.
Members of our support groups didn’t make any radical job changes, and chances are this may not be a good time to dump yours, but dealing with it may be easier when you know that you have a much larger job on your hands, staying alive and well. I promise you that your attitude about your job can change; you may not be so concerned about who gets the promotions. Just be glad you have a salary to carry you and appreciate the co-workers who genuinely care about you and your health. Another bonus us the fact that you can concentrate your attention on your work and the people you work with. It takes you outside yourself.
There is one exercise that comes up often in any sort of group situation and it’s worth repeating here for you to try. If you don’t take the time to sit down and do this, you’re cheating yourself out of something important.
Sit in a comfortable chair in a peaceful room and settle in for some quiet thought. Place a notepad and pen close by. If you can’t blank out distractions like fighting children or a loudly clicking clock, then incorporate them into your contemplation.
Here we go. Suppose you have just learned through divine intervention that today is the last day of your life. You feel well; you have plenty of money and no big worries or pressing obligations. What do you want to do with this day? Waste this day and what do you have left? Set yourself a time limit for this; take too much time and you’ll get bogged down with the hang-ups that prevented you from taking these positive steps in the first place.
Keep to your time limit but make sure your decisions are satisfying. I said satisfying, though not necessarily practical. It’s your dream. Write it in point form. Now we move on.
Next, you‘ve received news that you have one week to live. What are you going to do with that week? Next, stretch your lifetime to one month and write down your decisions. You’ve got the hang of it by now.
Check over your point form notes. Do you see a pattern emerging? You might be surprised how little you would change, or have you opted for massive change? Don’t leave things any longer. When you do get around to dying, you don’t want to review your life and find yourself full of regret for the things you didn’t do well, or just plain didn’t do. This can be done no matter what outside distractions are present. In the process you’ll improve your ability to concentrate.
This isn’t a frivolous exercise; it will tell you a lot about yourself.
Don’t let another day go by with lingering regrets for something you can fix. Make your life count. If your quiet exercises push some excess baggage to the forefront deal with it and get it out of the way. You can’t be one hundred percent about your life because it’s like a tapestry that’s never entirely finished. Just tidy up those loose ends.
This is the beginning of your new life plan.
continued in chapter 5: part 1
Wednesday, July 11, 2007
chapter 4: part 4
continued from chapter 4: part 3
We weren’t working out our new life-style in a vacuum. We worked it around the need to carry on daily work schedules, domestic tasks and the round of visitors we suddenly began having. The stream was fairly constant. Cherished sons and daughters-in law and grandchildren came from across the country. We loved seeing them but we missed and needed the quiet we had gotten used to. It’s hard to question the meaning of life when a soggy little kid crawls into bed with you demanding a story about Mister Wiggles, whoever that is.
When we were along together we kept up the comfortable old habits. We set aside time on Saturday mornings to buy grocery items at the Farmers Market and to buy the small household things jotted down on the master list during the week. We’d drop into the local auction rooms to place a reserve bid on something of interest. I mention these simple things because now they are my fond memories of a time when life was “normal.”
A new life plan was taking shape just the same. Our focus was firmly fixed on Hal’s health and the invisible cancer. We had joined a new, dynamic evening self help group with trained leaders, again through the Cancer society. The format of this one allowed people a chance to talk about their illnesses and fears and what they needed and wanted. To my relief there was a group devoted entirely to care givers and about this point because of the strain, you would have been hard-pressed to identify the caregiver from the cancer patient.
We watched helplessly while a young man and his wife anguished over the need for a bone marrow transplant for him and the fact that his chances of getting one in time to help were negligible and a divorced woman who had never been able to bring herself to tell her teen-age son that her two hospital stays were for mastectomies.
We loved one another, enjoyed our friends and our work and gave ourselves quiet time to think and contemplate. We slowly discarded any thoughts, acquaintances and actions that no longer suited our present thinking. We wanted to talk about living and loving and we naturally gravitated to frank, open people who could handle talk of life and death without problems. We shared this illness with the children and we stayed close to one another.
At the end of summer, Hal was finally ready to put the house on the market. We had to cope with strangers tramping through and weekend open houses and remembering to heat the pot pourri to mask the smell of cauliflower. It got to be a habit to whisk a cloth around the bathroom basins repeatedly and make sure the toilet lids were down, that all dirty dishes were hidden away in the dishwasher the instant a meal was finished and I found that the unwashed pots could be tucked away under the snow on the back porch in the case of a last-minute viewing.
continued in chapter 4: part 5
We weren’t working out our new life-style in a vacuum. We worked it around the need to carry on daily work schedules, domestic tasks and the round of visitors we suddenly began having. The stream was fairly constant. Cherished sons and daughters-in law and grandchildren came from across the country. We loved seeing them but we missed and needed the quiet we had gotten used to. It’s hard to question the meaning of life when a soggy little kid crawls into bed with you demanding a story about Mister Wiggles, whoever that is.
When we were along together we kept up the comfortable old habits. We set aside time on Saturday mornings to buy grocery items at the Farmers Market and to buy the small household things jotted down on the master list during the week. We’d drop into the local auction rooms to place a reserve bid on something of interest. I mention these simple things because now they are my fond memories of a time when life was “normal.”
A new life plan was taking shape just the same. Our focus was firmly fixed on Hal’s health and the invisible cancer. We had joined a new, dynamic evening self help group with trained leaders, again through the Cancer society. The format of this one allowed people a chance to talk about their illnesses and fears and what they needed and wanted. To my relief there was a group devoted entirely to care givers and about this point because of the strain, you would have been hard-pressed to identify the caregiver from the cancer patient.
We watched helplessly while a young man and his wife anguished over the need for a bone marrow transplant for him and the fact that his chances of getting one in time to help were negligible and a divorced woman who had never been able to bring herself to tell her teen-age son that her two hospital stays were for mastectomies.
We loved one another, enjoyed our friends and our work and gave ourselves quiet time to think and contemplate. We slowly discarded any thoughts, acquaintances and actions that no longer suited our present thinking. We wanted to talk about living and loving and we naturally gravitated to frank, open people who could handle talk of life and death without problems. We shared this illness with the children and we stayed close to one another.
At the end of summer, Hal was finally ready to put the house on the market. We had to cope with strangers tramping through and weekend open houses and remembering to heat the pot pourri to mask the smell of cauliflower. It got to be a habit to whisk a cloth around the bathroom basins repeatedly and make sure the toilet lids were down, that all dirty dishes were hidden away in the dishwasher the instant a meal was finished and I found that the unwashed pots could be tucked away under the snow on the back porch in the case of a last-minute viewing.
continued in chapter 4: part 5
Tuesday, July 10, 2007
chapter 4: part 3
continued from Chapter 4: part 2
Once we got that, " where-will-Pat-live?" madness out of our systems, our minds switched back to normal and we became more thoughtful and reasonable and eased up on the intensity of our daily lives. We learned we could value each day without going into dramatic overdrive.
We continued to say I love you, although not twenty times a day. And our kisses were more spontaneous and tender rather than acts of desperation. Slowly the good even tempo of our lives returned and we did what we had been doing anyway. We appreciated and loved one another.
We tried to keep the frightening thoughts locked inside, but the “cottage on the lake” caper released some of the strain. We recognized that our lives were changing and we were not completely in control, or at least our future together wasn’t.
We talked and thought and talked some more and slowly our needs were taking some form. It meant making choices, adding some important new flavors to our lives and discarding the stale.
It also meant in our case, loving one another unconditionally. We thought we had been doing that all along but we hadn’t really learned. Giving up that tired old marriage game, having the last word, was an example of that.
It also meant making sure there wasn’t any loose baggage to sort through with the children. No one gets through their children’s adolescence without some sort of unfinished business, and Hal made time to encourage the kids to close the gap if they had some lingering unfinished business.
Slowly we gained more control over our feelings and the initial shock subsided. We were able to sort things out each day so that there was never a major obstacle kept on the back burner to work through at a later time. We knew we had got through another day without physical pain or symptoms and we valued the chance to keep everything up to date.
We were relived that our conscious confrontation with mortality hadn’t left us opting for selling everything of value to take a world cruise, or roaming the countryside searching for Ashrams or faith healers or “miracle” clinics. It was almost a pleasant surprise to find that we weren’t about to change that much.
We were anchored to our reality and to one another and the flotsam in our lives was being quietly and simply cast aside. One positive outcome of getting a proverbial kick in the teeth is that you value the same life that you took for granted a while ago. We also had something else we had taken for granted in the past-we recognized we had been given the gift of time to tidy up any loose ends, whether either of us lived one month more or a complete life span.
We questioned how to “fight” this invisible enemy, which literally remained concealed and formless for months after the operation. We were constantly aware that this thing was still inside Hal’s body, but it was giving us some breathing time. Hal felt so well he couldn’t really believe he was carrying as ticking time bomb around inside him.
That little voice helped me when I let it. I believe in quiet contemplation to keep my life centered, but I was casual and undisciplined about how often this would happen. I began to set aside some time most days to sit quietly, keeping my thoughts stilled, to let my inner feelings come forward. This was a time of learning and I needed to keep my mind receptive to absorb as much as I could.
Everything I read and heard told me that a positive attitude can benefit the immune system. Adherents of self- help and positive thinking insist that everything to do with cancer hinges around the immune system and the job is to keep it humming.
continued in chapter 4: part 4
Once we got that, " where-will-Pat-live?" madness out of our systems, our minds switched back to normal and we became more thoughtful and reasonable and eased up on the intensity of our daily lives. We learned we could value each day without going into dramatic overdrive.
We continued to say I love you, although not twenty times a day. And our kisses were more spontaneous and tender rather than acts of desperation. Slowly the good even tempo of our lives returned and we did what we had been doing anyway. We appreciated and loved one another.
We tried to keep the frightening thoughts locked inside, but the “cottage on the lake” caper released some of the strain. We recognized that our lives were changing and we were not completely in control, or at least our future together wasn’t.
We talked and thought and talked some more and slowly our needs were taking some form. It meant making choices, adding some important new flavors to our lives and discarding the stale.
It also meant in our case, loving one another unconditionally. We thought we had been doing that all along but we hadn’t really learned. Giving up that tired old marriage game, having the last word, was an example of that.
It also meant making sure there wasn’t any loose baggage to sort through with the children. No one gets through their children’s adolescence without some sort of unfinished business, and Hal made time to encourage the kids to close the gap if they had some lingering unfinished business.
Slowly we gained more control over our feelings and the initial shock subsided. We were able to sort things out each day so that there was never a major obstacle kept on the back burner to work through at a later time. We knew we had got through another day without physical pain or symptoms and we valued the chance to keep everything up to date.
We were relived that our conscious confrontation with mortality hadn’t left us opting for selling everything of value to take a world cruise, or roaming the countryside searching for Ashrams or faith healers or “miracle” clinics. It was almost a pleasant surprise to find that we weren’t about to change that much.
We were anchored to our reality and to one another and the flotsam in our lives was being quietly and simply cast aside. One positive outcome of getting a proverbial kick in the teeth is that you value the same life that you took for granted a while ago. We also had something else we had taken for granted in the past-we recognized we had been given the gift of time to tidy up any loose ends, whether either of us lived one month more or a complete life span.
We questioned how to “fight” this invisible enemy, which literally remained concealed and formless for months after the operation. We were constantly aware that this thing was still inside Hal’s body, but it was giving us some breathing time. Hal felt so well he couldn’t really believe he was carrying as ticking time bomb around inside him.
That little voice helped me when I let it. I believe in quiet contemplation to keep my life centered, but I was casual and undisciplined about how often this would happen. I began to set aside some time most days to sit quietly, keeping my thoughts stilled, to let my inner feelings come forward. This was a time of learning and I needed to keep my mind receptive to absorb as much as I could.
Everything I read and heard told me that a positive attitude can benefit the immune system. Adherents of self- help and positive thinking insist that everything to do with cancer hinges around the immune system and the job is to keep it humming.
continued in chapter 4: part 4
Monday, July 9, 2007
chapter 4: part 2
continued from chapter 4: part 1
Yes, we were doing a lot of the “right” things; we went to cancer self-help group meetings, shared experiences and listened to many stories with happy endings. We updated our wills and cleaned up estate matters. On the surface we were behaving like responsible, coping people handling a tough period in our lives.
We’re still talking about a short period here, before Hal's first visit with the Oncologist.
Then craziness popped into our discussions that began out of nowhere, and could have been titled, “Where will Pat live and what will she do if Hal dies sooner rather than later?” It is a valid question but I was displaying that chronic inner dilemma: “ I’m helpless: how can I manage on my own?”
This question was worth a passing moment or more to think out but we carried it to extremes. We were living with the possibility that Hal might die of this cancer and there was some logic to what we were doing, but we could have just talked about it and made sure there was a general plan. We took it further. We corralled all the nearby children and we all set to work looking for a place for me to live, “afterward.”
I had been born in Vancouver and although I was now a firmly committed easterner, I never stopped missing the ocean. That became the project; find a small place at the edge of the water for the future widow lady. We lived in Toronto, located on the shores of disagreeably polluted Lake Ontario. I was surprised to learn that there actually were places on the lake still for sale despite the foolishness of swimming, fishing or even sitting too close.
The children branched out and took Sunday drives and so did we, away from the city center. We looked at all kinds of cottages, some winterized and some not. We glumly studied shacks with wood-burning stoves or space heaters, places with chemical toilets, land that squished under our feet from non-functioning septic tanks. They all had one thing in common. They were shacks and somehow it seemed right to me that I should live in shabby surroundings since throwing oneself on a funeral pyre was out of favor in Canada.
We should have taken a cue from the fact that every time we set out on a search the skies turned leaden; never a hint of sun or blue sky. Eventually some sort of reason returned to us and we all finally agreed we shouldn’t make any sudden decisions. Besides, I owned too much stuff to fit into a small cottage and Hal was feeling too fit to toss in the towel. There was also a niggling thought in my head that this assignment wasn’t really about getting on with life.
The kids were relieved to return to spending their weekends as they pleased and we returned to a less frenzied pace.
continued in Chapter 4: part 3
Yes, we were doing a lot of the “right” things; we went to cancer self-help group meetings, shared experiences and listened to many stories with happy endings. We updated our wills and cleaned up estate matters. On the surface we were behaving like responsible, coping people handling a tough period in our lives.
We’re still talking about a short period here, before Hal's first visit with the Oncologist.
Then craziness popped into our discussions that began out of nowhere, and could have been titled, “Where will Pat live and what will she do if Hal dies sooner rather than later?” It is a valid question but I was displaying that chronic inner dilemma: “ I’m helpless: how can I manage on my own?”
This question was worth a passing moment or more to think out but we carried it to extremes. We were living with the possibility that Hal might die of this cancer and there was some logic to what we were doing, but we could have just talked about it and made sure there was a general plan. We took it further. We corralled all the nearby children and we all set to work looking for a place for me to live, “afterward.”
I had been born in Vancouver and although I was now a firmly committed easterner, I never stopped missing the ocean. That became the project; find a small place at the edge of the water for the future widow lady. We lived in Toronto, located on the shores of disagreeably polluted Lake Ontario. I was surprised to learn that there actually were places on the lake still for sale despite the foolishness of swimming, fishing or even sitting too close.
The children branched out and took Sunday drives and so did we, away from the city center. We looked at all kinds of cottages, some winterized and some not. We glumly studied shacks with wood-burning stoves or space heaters, places with chemical toilets, land that squished under our feet from non-functioning septic tanks. They all had one thing in common. They were shacks and somehow it seemed right to me that I should live in shabby surroundings since throwing oneself on a funeral pyre was out of favor in Canada.
We should have taken a cue from the fact that every time we set out on a search the skies turned leaden; never a hint of sun or blue sky. Eventually some sort of reason returned to us and we all finally agreed we shouldn’t make any sudden decisions. Besides, I owned too much stuff to fit into a small cottage and Hal was feeling too fit to toss in the towel. There was also a niggling thought in my head that this assignment wasn’t really about getting on with life.
The kids were relieved to return to spending their weekends as they pleased and we returned to a less frenzied pace.
continued in Chapter 4: part 3
Friday, July 6, 2007
chapter 4: part 1 Planning your Life
continued from chapter 3: part 6
We felt enormous relief once we squared away our business affairs and without realizing it, we had closed the last loophole that permitted any backward looks.
The next question seemed to be--what do we do with the rest of our lives? The reality was that we didn’t just sit down and efficiently plan out what we’d do. We didn’t have any astounding revelations: sell everything and take a trip to the Rain Forest. Whip off to Mexico and have a shot at the peach pit “cures.” Sail around the world. Was there something we really ought to try?
I asked new friends in the support groups what changes cancer had made in their lives. Almost all returned to their usual habits although we agreed we sensed subtle changes in our attitudes about day-to-day living. We were much more aware of everything happening around us and valued each day.
One support group couple, Evan and Rachael had booked a cruise with friends before he was diagnosed; Evan insisted on following through after his colostomy and bladder removal, and they had a wonderful time. They were one of the few couples that continued to take trips, although they sometimes had to seek out treatment for a temporary medical problem.
Another support group friend, Matthew took the boldest step; he was running a successful business but when bladder cancer hit him in his mid-thirties, he found that he no longer wanted to eat and breathe company matters and sold out to begin a less stressful part of his life. When I last saw them he and Norma were trying to decide whether or not to have a child despite the uncertainty of their future. No one has a guarantee in life, but they were reminded of that more forcibly than most people.
We tried to settle back into our previous relaxed lifestyle, but now we were acutely conscious of time passing. It’s as though layer after layer of veils had parted before our eyes and we no longer saw time in measured blocks that we took for granted. Now we felt a need to live each moment, to “get on with life.” That sounds fine but what the hell does it mean, anyway?
We were happily married, we lived a quiet, home-loving life but nagging away at us was the thought that we should be making more of an impact on our world. We were sorting out ways to make our lives more meaningful, just as though we had never done that in the past. That really was the point but we thrashed and floundered about before we realized we really did have it all.
And so began our crazy period.
to be continued in chapter 4: part2
We felt enormous relief once we squared away our business affairs and without realizing it, we had closed the last loophole that permitted any backward looks.
The next question seemed to be--what do we do with the rest of our lives? The reality was that we didn’t just sit down and efficiently plan out what we’d do. We didn’t have any astounding revelations: sell everything and take a trip to the Rain Forest. Whip off to Mexico and have a shot at the peach pit “cures.” Sail around the world. Was there something we really ought to try?
I asked new friends in the support groups what changes cancer had made in their lives. Almost all returned to their usual habits although we agreed we sensed subtle changes in our attitudes about day-to-day living. We were much more aware of everything happening around us and valued each day.
One support group couple, Evan and Rachael had booked a cruise with friends before he was diagnosed; Evan insisted on following through after his colostomy and bladder removal, and they had a wonderful time. They were one of the few couples that continued to take trips, although they sometimes had to seek out treatment for a temporary medical problem.
Another support group friend, Matthew took the boldest step; he was running a successful business but when bladder cancer hit him in his mid-thirties, he found that he no longer wanted to eat and breathe company matters and sold out to begin a less stressful part of his life. When I last saw them he and Norma were trying to decide whether or not to have a child despite the uncertainty of their future. No one has a guarantee in life, but they were reminded of that more forcibly than most people.
We tried to settle back into our previous relaxed lifestyle, but now we were acutely conscious of time passing. It’s as though layer after layer of veils had parted before our eyes and we no longer saw time in measured blocks that we took for granted. Now we felt a need to live each moment, to “get on with life.” That sounds fine but what the hell does it mean, anyway?
We were happily married, we lived a quiet, home-loving life but nagging away at us was the thought that we should be making more of an impact on our world. We were sorting out ways to make our lives more meaningful, just as though we had never done that in the past. That really was the point but we thrashed and floundered about before we realized we really did have it all.
And so began our crazy period.
to be continued in chapter 4: part2
Thursday, July 5, 2007
chapter 3; part 6
continued from Chapter 3: part 5
While we have mortality on our minds, you might want to check into the writing of a living will. Simply put, you want to die with dignity and pain- free, if you must die at all. This won’t have a lot of meaning if you’ve never had a serious brush with death or illness and you haven’t seen it happen to those around you.
Get a book from the library or send for a Living Will Kit (I got mine from a university). It’s really a case of finding out what the medical profession is obliged to do and what your rights are.
One point is how you want it handled if you go into heart failure or need resuscitation.
I heard of one terminally ill woman who was adamant about meeting death on her terms, without a network of tubes and wires sticking out of her. To make sure there wouldn’t be a misunderstanding, she taped her living will over her hospital bed for everyone to see. The staff might be perfectly willing to do it your way but there is a danger that your wishes will be buried in your steadily growing medical file at a time when you’re not able to talk about it.
Now, let’s plan your funeral. Hey, why not? Who is a better judge of the way you want your send-off arranged. If you belong to a church, go visit the minister and talk about it. Then write it down and put the information in a file with your will and the other papers you are slowly accumulating.
I was never one to put things off until the last minute, so we had joined the Memorial Society years ago even though we felt uncomfortable making plans when we were still in our thirties.
When the time came to activate the plans, I didn’t have to change a thing. Do you want a service of some kind? A funeral plot or cremation? Where should the ashes go? How much should a funeral cost? Is there money set aside for this?
And what about savings? Once the first shock wears off, you will be thinking constantly about what will happen if the bread winner can’t work, and there isn’t any money coming in. I can only tell my own tale here. We did seek out advice from various sources and then we shook it all down and made some decisions.
We had very little in savings, but our house was paid for and Hal continued to take some writing assignments.
Now we’ve reached consolidation time. You’ve got all your affairs up to date and you’re satisfied you’ve done the basics. Now where will you keep this information? Your lawyer will have a copy of your wills and power of attorney documents but there are other papers such as insurance information, funeral arrangements, all those things.
Sit down at a computer or a typewriter if you’re a little behind the times and write down the number of every bank account, insurance policy, investments, everything. You will now have a record on the computer but also print it or photocopy it and put the information in one place and tell people where that is. It wouldn’t hurt to make copies of everything and give the sealed file to a friend or relative.
Once this is done and you update when necessary, you are free of niggling worries and you can concentrate on the business of living.
continued in chapter 4: part 1
While we have mortality on our minds, you might want to check into the writing of a living will. Simply put, you want to die with dignity and pain- free, if you must die at all. This won’t have a lot of meaning if you’ve never had a serious brush with death or illness and you haven’t seen it happen to those around you.
Get a book from the library or send for a Living Will Kit (I got mine from a university). It’s really a case of finding out what the medical profession is obliged to do and what your rights are.
One point is how you want it handled if you go into heart failure or need resuscitation.
I heard of one terminally ill woman who was adamant about meeting death on her terms, without a network of tubes and wires sticking out of her. To make sure there wouldn’t be a misunderstanding, she taped her living will over her hospital bed for everyone to see. The staff might be perfectly willing to do it your way but there is a danger that your wishes will be buried in your steadily growing medical file at a time when you’re not able to talk about it.
Now, let’s plan your funeral. Hey, why not? Who is a better judge of the way you want your send-off arranged. If you belong to a church, go visit the minister and talk about it. Then write it down and put the information in a file with your will and the other papers you are slowly accumulating.
I was never one to put things off until the last minute, so we had joined the Memorial Society years ago even though we felt uncomfortable making plans when we were still in our thirties.
When the time came to activate the plans, I didn’t have to change a thing. Do you want a service of some kind? A funeral plot or cremation? Where should the ashes go? How much should a funeral cost? Is there money set aside for this?
And what about savings? Once the first shock wears off, you will be thinking constantly about what will happen if the bread winner can’t work, and there isn’t any money coming in. I can only tell my own tale here. We did seek out advice from various sources and then we shook it all down and made some decisions.
We had very little in savings, but our house was paid for and Hal continued to take some writing assignments.
Now we’ve reached consolidation time. You’ve got all your affairs up to date and you’re satisfied you’ve done the basics. Now where will you keep this information? Your lawyer will have a copy of your wills and power of attorney documents but there are other papers such as insurance information, funeral arrangements, all those things.
Sit down at a computer or a typewriter if you’re a little behind the times and write down the number of every bank account, insurance policy, investments, everything. You will now have a record on the computer but also print it or photocopy it and put the information in one place and tell people where that is. It wouldn’t hurt to make copies of everything and give the sealed file to a friend or relative.
Once this is done and you update when necessary, you are free of niggling worries and you can concentrate on the business of living.
continued in chapter 4: part 1
Tuesday, July 3, 2007
chapter 3: part 5
continued from Chapter 3: part 4
Who pays the bills in your house? Both partners should be competent in this department, although it’s mistake to try to do it together. You need to know how the insurance and mortgage payments are handled and have a rough idea on how you spend your money. We had taken turns with this over the years so this wasn’t a hard one.
Hal was a free-lancer, an occupation that is much more prevalent now than it was then. We had paid for years on private disability insurance, which would pay out one thousand dollars a month beginning sixty days after diagnosis or after the disability was reported, and the claimant was unable to work for a period of time. He insisted on working when he could so we didn’t apply for this until the last few months of his illness.
Before that, we lived on savings and revenue from occasional assignment Hal took on when he felt well.
For those working in permanent jobs, a trip to the Human Resources is in order, to have a frank and personal discussion with someone there, to find out what options are open to you. Take notes and if something is unclear later, go back and check, anything to keep your anxiety level down.
Now is a good time to burn the diaries. By this, I mean go through your personal papers and possessions and decide just what you wouldn’t want anyone to find after your death. If you saved love letters or other correspondence you’re rather didn’t go into other hands, consign them to the fireplace or shredder.
On the other side of this, you might consider writing letters to the people you love, to be given to them in the event you die sooner than later. I wish Hal had done this. I knew how he felt about the kids and me but it would have been something tangible from him. It’s hard for a professional writer to simply write a personal letter. I have to admit that to this day, I haven’t tucked away personal letters to the people I love.
It’s also a good time to forgive your enemies. We didn’t have any known enemies but we had friends with ongoing family feuds, now is a good time to get it settled. Your adversary may need some time to recognize that you are a different person from the one who was carrying on the feud, so allow some latitude. The more serenity you can muster in your life, the better off you and your immune system will be. Get the emotional decks cleared.
continued in chapter 3; part 6
Who pays the bills in your house? Both partners should be competent in this department, although it’s mistake to try to do it together. You need to know how the insurance and mortgage payments are handled and have a rough idea on how you spend your money. We had taken turns with this over the years so this wasn’t a hard one.
Hal was a free-lancer, an occupation that is much more prevalent now than it was then. We had paid for years on private disability insurance, which would pay out one thousand dollars a month beginning sixty days after diagnosis or after the disability was reported, and the claimant was unable to work for a period of time. He insisted on working when he could so we didn’t apply for this until the last few months of his illness.
Before that, we lived on savings and revenue from occasional assignment Hal took on when he felt well.
For those working in permanent jobs, a trip to the Human Resources is in order, to have a frank and personal discussion with someone there, to find out what options are open to you. Take notes and if something is unclear later, go back and check, anything to keep your anxiety level down.
Now is a good time to burn the diaries. By this, I mean go through your personal papers and possessions and decide just what you wouldn’t want anyone to find after your death. If you saved love letters or other correspondence you’re rather didn’t go into other hands, consign them to the fireplace or shredder.
On the other side of this, you might consider writing letters to the people you love, to be given to them in the event you die sooner than later. I wish Hal had done this. I knew how he felt about the kids and me but it would have been something tangible from him. It’s hard for a professional writer to simply write a personal letter. I have to admit that to this day, I haven’t tucked away personal letters to the people I love.
It’s also a good time to forgive your enemies. We didn’t have any known enemies but we had friends with ongoing family feuds, now is a good time to get it settled. Your adversary may need some time to recognize that you are a different person from the one who was carrying on the feud, so allow some latitude. The more serenity you can muster in your life, the better off you and your immune system will be. Get the emotional decks cleared.
continued in chapter 3; part 6
Monday, July 2, 2007
chapter 3: part 4
continued from Chapter 3: part 3
When the time came, the closing of Hal’s estate would be pretty straightforward, but there are prescribed steps to follow. The lawyer and I were Hal’s executors. During my first visit with Alan after Hal’s death, I carefully rounded up any documents I thought he might need and a second visit wasn’t needed.
In retrospect, I can say unequivocally that a woman is doing herself a disservice is she turns all the estate matters over to others. This is the time to muster all the self confidence you can.
Do you have a safety deposit box? What’s in it? Our box contained our wedding certificate, some insurance papers, old coins and pictures and some furniture and jewelry appraisals, in case of theft. When a partner dies, the box contents must be formally listed in the presence of a bank representative and then the box would be sealed until probate was completed. We closed out the box and put our far from valuable items in a fireproof box, at home.
We analyzed our life style and looked at ways to pare down for financial and physical reasons. I had quit my job a couple of years back to remain at home and consciously made the decision not to return to work but to look after Hal and worry about the consequences later. A lot of people don’t have the choice and I am grateful that I did. We were content to stay put most of the time, we didn’t own a cottage and we drove a cheap, serviceable car. We loved restaurant dining and switched from dinners to lunches, to pare down costs. We loved going to a few auction sales and switched to tendering reserve bids for items at a price we could afford instead of getting caught up in the heat of the bidding.
A major expense was the upkeep of our beloved home, a century house in regular need of repairs and we hadn’t even reached the stage where we could decorate instead of general maintenance.
On the physical side, our cleaning lady had moved on and I was trying to keep up with the cleaning of ten plus rooms and knew I would need a lot of stamina to care for Hal if his illness progressed.
I knew with a sick certainty that aside from a small life insurance policy, we had few assets except that we owned the house outright and the market was appreciating.
I broached the idea of moving to smaller (and cheaper) quarters and Hal was uncomfortable with the idea, so we left it for a while.
We had that awful investment loan that weighed heavily on me. Before his illness Hal was concerned that we hadn't saved more for retirement and he looked for ways to shore up our assets. We were so gullible that, taking the advice of the accountant soon-to-be-realtor, We took out a one hundred thousand dollar loan against our house and began investing through a hedge trader, exactly two days before Black Monday when the country sank into recession. It seemed wrong to me to get into this but I didn't have the confidence to fight it.
Hal could never bring himself to give up completely on these stocks that were failing and we were paying a thousand dollars a month in interest payments. This was the first item of business I handled after Hal died; the hedge trader was sent packing and I liquidated, with a huge sigh of relief.
Since we were both out of our league when dealing with financial matters, Hal wanted professional advice about ways to stay afloat if he was unable to work and find out just what his net worth was.
First, we visited the accountant, the one who soon after gave up his profession to take on real estate and continued visiting the racetrack. We had known him for a few years but he was never able to get it out of his head that I was formerly a schoolteacher and he thought I should return to my old teaching job. I had been a commercial artist and a Human Resources specialist. He also suggested that, if I were on my own, I could rent out the house. “And then what?” I asked. He had no idea.
We hired a professional adviser and spent time with her setting out our entire financial picture. She solemnly absorbed this and went away to write out a financial plan. I came across this much later and was amazed at how much information she lacked about her own profession.
The good part of this expensive exercise was that we finally clarified our thoughts about our possessions, assets and options.
to be continued in Chapter 3: part 5
When the time came, the closing of Hal’s estate would be pretty straightforward, but there are prescribed steps to follow. The lawyer and I were Hal’s executors. During my first visit with Alan after Hal’s death, I carefully rounded up any documents I thought he might need and a second visit wasn’t needed.
In retrospect, I can say unequivocally that a woman is doing herself a disservice is she turns all the estate matters over to others. This is the time to muster all the self confidence you can.
Do you have a safety deposit box? What’s in it? Our box contained our wedding certificate, some insurance papers, old coins and pictures and some furniture and jewelry appraisals, in case of theft. When a partner dies, the box contents must be formally listed in the presence of a bank representative and then the box would be sealed until probate was completed. We closed out the box and put our far from valuable items in a fireproof box, at home.
We analyzed our life style and looked at ways to pare down for financial and physical reasons. I had quit my job a couple of years back to remain at home and consciously made the decision not to return to work but to look after Hal and worry about the consequences later. A lot of people don’t have the choice and I am grateful that I did. We were content to stay put most of the time, we didn’t own a cottage and we drove a cheap, serviceable car. We loved restaurant dining and switched from dinners to lunches, to pare down costs. We loved going to a few auction sales and switched to tendering reserve bids for items at a price we could afford instead of getting caught up in the heat of the bidding.
A major expense was the upkeep of our beloved home, a century house in regular need of repairs and we hadn’t even reached the stage where we could decorate instead of general maintenance.
On the physical side, our cleaning lady had moved on and I was trying to keep up with the cleaning of ten plus rooms and knew I would need a lot of stamina to care for Hal if his illness progressed.
I knew with a sick certainty that aside from a small life insurance policy, we had few assets except that we owned the house outright and the market was appreciating.
I broached the idea of moving to smaller (and cheaper) quarters and Hal was uncomfortable with the idea, so we left it for a while.
We had that awful investment loan that weighed heavily on me. Before his illness Hal was concerned that we hadn't saved more for retirement and he looked for ways to shore up our assets. We were so gullible that, taking the advice of the accountant soon-to-be-realtor, We took out a one hundred thousand dollar loan against our house and began investing through a hedge trader, exactly two days before Black Monday when the country sank into recession. It seemed wrong to me to get into this but I didn't have the confidence to fight it.
Hal could never bring himself to give up completely on these stocks that were failing and we were paying a thousand dollars a month in interest payments. This was the first item of business I handled after Hal died; the hedge trader was sent packing and I liquidated, with a huge sigh of relief.
Since we were both out of our league when dealing with financial matters, Hal wanted professional advice about ways to stay afloat if he was unable to work and find out just what his net worth was.
First, we visited the accountant, the one who soon after gave up his profession to take on real estate and continued visiting the racetrack. We had known him for a few years but he was never able to get it out of his head that I was formerly a schoolteacher and he thought I should return to my old teaching job. I had been a commercial artist and a Human Resources specialist. He also suggested that, if I were on my own, I could rent out the house. “And then what?” I asked. He had no idea.
We hired a professional adviser and spent time with her setting out our entire financial picture. She solemnly absorbed this and went away to write out a financial plan. I came across this much later and was amazed at how much information she lacked about her own profession.
The good part of this expensive exercise was that we finally clarified our thoughts about our possessions, assets and options.
to be continued in Chapter 3: part 5
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