continued from chapter 10: part 3
The proverbial wheels fell off on the day we were to move to our new place. A move at such a time was beyond stressful but we had no choice. It was Saint Patrick’s Day and also marked the day of the last and worst snowstorm of the year, punctuated by freezing rain.
Many friends made themselves available to help but because we were emotionally derailed by Hal’s obvious health complications, they weren’t called.
For several weeks leading up to the move, Hal began getting pains similar to the ones that began this ordeal; we decided together we would try to muddle through this until the move was over. At that time, believe it or not, the move was most important. We had a pretty good idea that he was in trouble but we didn’t mention this to anyone. We were also disastrously sleep deprived.
One thing was certain; the packing was only one- third done by moving day and this was an eleven -room house.. Mike and Lorrie came over the night before and Mike still dines out on the horror story:
"I walked into their bedroom and there were the usual books stacked on the bedside tables, the bed was neatly made, the pictures and ornaments were still on the walls and the drapes were still hanging. I checked their studies and the computers were still hooked up and the books still on the shelves; even the waste baskets were full."
He put in an emergency call to brother Mark and his wife, who planned to come over anyway. They arranged to borrow a small truck and took the kids out of school to help.
We had stayed at Mike and Lorrie’s the night before the move and during the night Hal had a violent attack of pain and vomited a lot. I held him in my arms between bouts until he fell asleep at dawn, when I dressed and headed for the house. Mike heard me and quickly followed. It was snowing heavily.
At the house we packed like something out of a speeded- up silent movie. Mark and Olga and the kids arrived and between them they kept ahead of the energetic movers.
In the meantime Hal phoned to say he felt fine and was on his way over by cab but he didn’t arrive. By this time the phone had been disconnected I trudged through the snow to use a neighbor’s phone. It rang and rang and finally he answered. He had fallen asleep. He was on heavy painkillers and said he would take the subway and streetcar over and I almost popped a fuse. He eventually promised to take a cab and finally breezed in an hour later.
The movers were finally loaded around five o’clock, and a blessed neighbor was fielding phone calls for us so that we knew when the closing was done and we could arrange to get a house key. Hal went ahead with the movers and we stayed behind to do the final cleaning.
I had one of my more ambivalent feelings about morphine that night when we arrived at the house after a frightening trip on the ice-coated highway to find Hal in a cheerful daze and directing heaviest pieces of furniture placement to the wrong rooms, and I knew I would have to sort that one out on my own, later.
We were left with a tunnel arrangement, enabling us to get into the house, swerve left to the kitchen, step over two huge cartons and around the bookcases standing far out from the wall and through to the bathroom and bedroom. Generally that wouldn’t be a problem but in this case I didn’t get it sorted out for two months.
The movers left, the kids took their exhausted bodies home and we fed the cat and picked up our overnight cases and headed for a nearby inn to spend the night. On the way we discussed ordering dinner from room service (it was after ten o’clock) and having a wonderful hot shower.
Our ordeal wasn't over just yet.
continued in chapter 10: part 5
Friday, August 31, 2007
Thursday, August 30, 2007
chapter 10: part 3 Accept Help
continued from chapter 10: part 2
Lorrie and MelissaI came by one day when I was feeling depressed about Hal’s set-back after a round of chemo.
Melissa sat with Hal and they had a good father-daughter chat and Lorrie took me out a plant nursery, one of my favorite places, and the trip was like walking into the technicolor of Oz from the bleakness of black and white Kansas.
I could focus on living, growing things and feast on the wonderful colors. You don’t realize how tense you can become until you try unclenching your jaw. I had so much more spirit and energy for days from that simple excursion.
Melissa was busy with a new baby but she provided an invaluable service. In the latter part of Hal’s illness, there were many scary times when I wasn’t sure whether to pack him off to the hospital or call the doctor or wait it out. I would call Melissa and she would calmly and rationally help me work through it. If a phone call to a doctor or head nurse was necessary, she helped me frame the words so that they were concise and left no doubt as to the problem. By the time we had worked out the strategy, I had calmed down and my tone of voice was back to normal.
Other times, I just needed to talk about what was happening and she was a truly wonderful listener. That was a lot of stress to pile on an already stressed new mother but she was unfailingly gentle and practical at the same time.
Sometimes it’s unsettling to offer to sit with a seriously ill friend but thinking about it is much worse than being there. You are looking at a frail body but the person who is your friend is in that body; it’s just different packaging. You are bringing the outside with you and your visit does such good. You talk when the patient shows interest and otherwise you sit quietly, even with a book. You are also probably giving the caregiver some time to get out of the house, free briefly from worry.
continued in chapter 10: part 4
Lorrie and MelissaI came by one day when I was feeling depressed about Hal’s set-back after a round of chemo.
Melissa sat with Hal and they had a good father-daughter chat and Lorrie took me out a plant nursery, one of my favorite places, and the trip was like walking into the technicolor of Oz from the bleakness of black and white Kansas.
I could focus on living, growing things and feast on the wonderful colors. You don’t realize how tense you can become until you try unclenching your jaw. I had so much more spirit and energy for days from that simple excursion.
Melissa was busy with a new baby but she provided an invaluable service. In the latter part of Hal’s illness, there were many scary times when I wasn’t sure whether to pack him off to the hospital or call the doctor or wait it out. I would call Melissa and she would calmly and rationally help me work through it. If a phone call to a doctor or head nurse was necessary, she helped me frame the words so that they were concise and left no doubt as to the problem. By the time we had worked out the strategy, I had calmed down and my tone of voice was back to normal.
Other times, I just needed to talk about what was happening and she was a truly wonderful listener. That was a lot of stress to pile on an already stressed new mother but she was unfailingly gentle and practical at the same time.
Sometimes it’s unsettling to offer to sit with a seriously ill friend but thinking about it is much worse than being there. You are looking at a frail body but the person who is your friend is in that body; it’s just different packaging. You are bringing the outside with you and your visit does such good. You talk when the patient shows interest and otherwise you sit quietly, even with a book. You are also probably giving the caregiver some time to get out of the house, free briefly from worry.
continued in chapter 10: part 4
Wednesday, August 29, 2007
chapter 10: part 2
continued from chapter 10: part 1
Friends from the office have a special role to fill; at first the office gossip is fine, as long as it isn’t about an office reshuffle that might stress out the absentee. Bring in messages of concern, keep it light and remember you don’t have to stay long. Berry remembers with gratitude the three office friends who faithfully came once a week to see Ron while he was recuperating. He appreciated being able to keep up with office happenings and he felt part of the group and not an outcast.
Hal was never one to ask his sons to help him with any sort of home project, but when they learned he was planning to rebuild the back porch shortly after his operation, it became a family project and provided such closeness. Hal designed it and ordered the wood and Mark and Mike were present to tear down the old porch and rebuild. Hal was feeling pretty weak but interested, and I have snapshots of him sitting in a chair on the back lawn while the boys worked. Hal was a good project manager, too. He was delighted to see how much Mark knew about building and Mike was only too eager to learn for when he has his own place. He was content to watch, soak in the closeness with his sons, and give advice only when asked.
Keep a list taped on the wall near the phone with things that require doing that you haven’t been able to do. If friends or family offer to help then let them cook, bake, mend, perform minor repairs, do errands or possibly give some business advice over matters the partner looked after and is not prepared to deal with now. Use that list and if one item is particularly urgent, then speak up.
When Hal felt well, he met friends for lunch regularly. Later, when he was in hospital, his lunch buddies came to visit there on their way to lunch. The talked shop and joked and left him still feeling part of the bunch. That was such a good tonic.
During the times when Hal was recovering from a round of chemotherapy, anxious friends would ask to visit and we often found the visits hard to handle. There are two groups here--the ones who pop in and instinctively know how long to stay and what to do and others who who are unsure of themselves. I didn't want the latter group to come but did I say so? No.
We both appreciated their caring but it was hard for me to concentrate on simple tasks like making coffee and checking to see if there was cream and I wasn't into small talk anymore.
I checked these feeling out with others going through the same experiences and they all felt the same way. By all means, come and visit but here's what you do. You bring with you a coffee cake and the coffee from Starbucks or wherever, and make it a short visit.
You are valued and welcome, but the household is not running normally and your help is welcome. Social visits are healthy and necessary but your hosts aren’t living a normal life as yet.
Other things you might do is to bring something ready made such as a casserole something will keep for a few days. Getting out for groceries is hard to do and after a while it doesn’t seem important.
The length of your visit can vary, but keep it to half an hour or so unless you are urged to stay longer. If you are, time the rest of the visit in half hour increments and watch for signs of weariness. Some of the recuperating people couldn’t bring themselves to ask a dear friend to leave because they were tired. Hal was this way and although he knew the friend would understand he couldn’t say please leave now.
It’s best that when you arrive, to ask the hostess if half an hour is about right , then take your leave. Hal could sometimes excuse himself to return to the bedroom to rest but not always.
Phone calls were always welcome but keep them brief. Occasionally I would be caught on the phone with a friend who had just learned of Hal’s illness; this person wouldn’t know how to get off the phone and I was too drained to do anything about it and after I felt so weary.
All the while I would be listening for sounds from the bedroom. You’re not behaving like a normal person during tense times and you simply forget temporarily how to handle what should be mildly difficult situations.
We would accept those infrequent dinner invitations and that felt good. I often wished more people would ask us over to their place. They would assume we couldn’t make it. It would give Hal something to look forward to and then we could leave when he said the word.
Another way to help is to send casseroles, cookies, puddings, fruit, or bring a favorite movie, if not for the patient then the caregiver.
I worked hard to give Hal nutritious, attractive looking food he could manage but when he was settled into bed for the night I would settle for a peanut butter sandwich. I forgot after a while what a vegetable was like.
We had a grim joke that for every pound Hal lost, I would gain one.
continued in chapter 10: part 3
Friends from the office have a special role to fill; at first the office gossip is fine, as long as it isn’t about an office reshuffle that might stress out the absentee. Bring in messages of concern, keep it light and remember you don’t have to stay long. Berry remembers with gratitude the three office friends who faithfully came once a week to see Ron while he was recuperating. He appreciated being able to keep up with office happenings and he felt part of the group and not an outcast.
Hal was never one to ask his sons to help him with any sort of home project, but when they learned he was planning to rebuild the back porch shortly after his operation, it became a family project and provided such closeness. Hal designed it and ordered the wood and Mark and Mike were present to tear down the old porch and rebuild. Hal was feeling pretty weak but interested, and I have snapshots of him sitting in a chair on the back lawn while the boys worked. Hal was a good project manager, too. He was delighted to see how much Mark knew about building and Mike was only too eager to learn for when he has his own place. He was content to watch, soak in the closeness with his sons, and give advice only when asked.
Keep a list taped on the wall near the phone with things that require doing that you haven’t been able to do. If friends or family offer to help then let them cook, bake, mend, perform minor repairs, do errands or possibly give some business advice over matters the partner looked after and is not prepared to deal with now. Use that list and if one item is particularly urgent, then speak up.
When Hal felt well, he met friends for lunch regularly. Later, when he was in hospital, his lunch buddies came to visit there on their way to lunch. The talked shop and joked and left him still feeling part of the bunch. That was such a good tonic.
During the times when Hal was recovering from a round of chemotherapy, anxious friends would ask to visit and we often found the visits hard to handle. There are two groups here--the ones who pop in and instinctively know how long to stay and what to do and others who who are unsure of themselves. I didn't want the latter group to come but did I say so? No.
We both appreciated their caring but it was hard for me to concentrate on simple tasks like making coffee and checking to see if there was cream and I wasn't into small talk anymore.
I checked these feeling out with others going through the same experiences and they all felt the same way. By all means, come and visit but here's what you do. You bring with you a coffee cake and the coffee from Starbucks or wherever, and make it a short visit.
You are valued and welcome, but the household is not running normally and your help is welcome. Social visits are healthy and necessary but your hosts aren’t living a normal life as yet.
Other things you might do is to bring something ready made such as a casserole something will keep for a few days. Getting out for groceries is hard to do and after a while it doesn’t seem important.
The length of your visit can vary, but keep it to half an hour or so unless you are urged to stay longer. If you are, time the rest of the visit in half hour increments and watch for signs of weariness. Some of the recuperating people couldn’t bring themselves to ask a dear friend to leave because they were tired. Hal was this way and although he knew the friend would understand he couldn’t say please leave now.
It’s best that when you arrive, to ask the hostess if half an hour is about right , then take your leave. Hal could sometimes excuse himself to return to the bedroom to rest but not always.
Phone calls were always welcome but keep them brief. Occasionally I would be caught on the phone with a friend who had just learned of Hal’s illness; this person wouldn’t know how to get off the phone and I was too drained to do anything about it and after I felt so weary.
All the while I would be listening for sounds from the bedroom. You’re not behaving like a normal person during tense times and you simply forget temporarily how to handle what should be mildly difficult situations.
We would accept those infrequent dinner invitations and that felt good. I often wished more people would ask us over to their place. They would assume we couldn’t make it. It would give Hal something to look forward to and then we could leave when he said the word.
Another way to help is to send casseroles, cookies, puddings, fruit, or bring a favorite movie, if not for the patient then the caregiver.
I worked hard to give Hal nutritious, attractive looking food he could manage but when he was settled into bed for the night I would settle for a peanut butter sandwich. I forgot after a while what a vegetable was like.
We had a grim joke that for every pound Hal lost, I would gain one.
continued in chapter 10: part 3
Tuesday, August 28, 2007
chapter 10: part 1 Accept Help
continued from chapter 9: part 4
I’m a member of the I’d rather do it myself school from way back and learning to accept help during Hal‘s illness was another lesson to learn. I had the idea that if I didn’t do everything myself I was showing weakness and that might not help Hal. My false pride slowly evaporated as I learned the value of receiving sympathetic support from friends and family.
This is partly about learning to say yes. The only time the rules change is if you are by nature a taker, a person who willingly turns over responsibility to a willing ally; then you are better off learning to say, "No thanks, I can do it myself," or you become someone you won’t want to know. A clinger.
Sometimes you can give help when visitors are uneasy. "I’d like to visit but what would I say?"
I used to ask questions like this when a friend was ailing and now I know the answers.
In the early days, your friends will be as upset as you are and they will flounder around waiting for cues from you. What can they do for you and your partner? Also at first, you may feel you want to handle things by yourself while you are figuring things out, and you probably can.
There are two stages to the early part of a prolonged illness. First is the stage when people send cards and books or offer to run errands or do some driving, but since cancer takes a long time to control, don’t be disappointed when the phone calls and the offers to help start to fade away. It’s not that people care any less, it’s just that they have their own lives and problems and your cancer isn’t as imposing as it was at first.
When Hal told friends about his cancer, they were upset and spoke of feeling helpless, but always finished with, "If there is anything I can do." The response to I’m feeling helpless is that the fact that someone cares and is telling you is such a help. The words don’t have to be flowery. Just be there.
And sometimes just take the initiative and do something; bring food, send a book, flowers, audio or video tapes.
Our pal Connie told me much later that she had read somewhere that the best thing one can do is to keep in close touch and listen for clues of needed help and that’s what she did. She phoned regularly and never talked long. When Hal was feeling punk from his chemotherapy and I needed to get out to do some errands, she dropped everything to slip over bearing a basket of fresh fruits and some of Ian’s health bread that hit the spot with a guy who hadn’t felt like eating. She sat on the foot of the bed and they talked shop and when she left Hal was so much more relaxed and animated for the rest of the day.
continued in chapter 10: part 2
I’m a member of the I’d rather do it myself school from way back and learning to accept help during Hal‘s illness was another lesson to learn. I had the idea that if I didn’t do everything myself I was showing weakness and that might not help Hal. My false pride slowly evaporated as I learned the value of receiving sympathetic support from friends and family.
This is partly about learning to say yes. The only time the rules change is if you are by nature a taker, a person who willingly turns over responsibility to a willing ally; then you are better off learning to say, "No thanks, I can do it myself," or you become someone you won’t want to know. A clinger.
Sometimes you can give help when visitors are uneasy. "I’d like to visit but what would I say?"
I used to ask questions like this when a friend was ailing and now I know the answers.
In the early days, your friends will be as upset as you are and they will flounder around waiting for cues from you. What can they do for you and your partner? Also at first, you may feel you want to handle things by yourself while you are figuring things out, and you probably can.
There are two stages to the early part of a prolonged illness. First is the stage when people send cards and books or offer to run errands or do some driving, but since cancer takes a long time to control, don’t be disappointed when the phone calls and the offers to help start to fade away. It’s not that people care any less, it’s just that they have their own lives and problems and your cancer isn’t as imposing as it was at first.
When Hal told friends about his cancer, they were upset and spoke of feeling helpless, but always finished with, "If there is anything I can do." The response to I’m feeling helpless is that the fact that someone cares and is telling you is such a help. The words don’t have to be flowery. Just be there.
And sometimes just take the initiative and do something; bring food, send a book, flowers, audio or video tapes.
Our pal Connie told me much later that she had read somewhere that the best thing one can do is to keep in close touch and listen for clues of needed help and that’s what she did. She phoned regularly and never talked long. When Hal was feeling punk from his chemotherapy and I needed to get out to do some errands, she dropped everything to slip over bearing a basket of fresh fruits and some of Ian’s health bread that hit the spot with a guy who hadn’t felt like eating. She sat on the foot of the bed and they talked shop and when she left Hal was so much more relaxed and animated for the rest of the day.
continued in chapter 10: part 2
Monday, August 27, 2007
chapter 9: part 4
continued from Ch 9 part 3
Excerpt from a letter written by Hal :
I’m going to heal myself.
I am not scared-just a little confused about what to do. Would I be better off scared? i.e: am I too complacent?
Maybe I am complacent because I see myself as having been incredibly lucky all my life with no misfortunes to speak of-nothing that could not be overcome. I just can’t believe my good fortune has suddenly been reversed.
Good things will continue for me as they always have-and so, somehow, this bad thing that exists only in the Ex-ray plates will either go away or be overcome by my optimism and my life-long propensity for good fortune.
Dosdall (author Claude Dosdall) generalizes about the needs and responses of the “cancer-prone.” Does having cancer make me a “cancer-prone” by definition? Am I kidding myself?
Must I have a strong passion for life in order to survive?
Isn’t it enough just to like being alive- taking each day as it comes and enjoying whatever it offers?
continued in chapter 10: part 1
Excerpt from a letter written by Hal :
I’m going to heal myself.
I am not scared-just a little confused about what to do. Would I be better off scared? i.e: am I too complacent?
Maybe I am complacent because I see myself as having been incredibly lucky all my life with no misfortunes to speak of-nothing that could not be overcome. I just can’t believe my good fortune has suddenly been reversed.
Good things will continue for me as they always have-and so, somehow, this bad thing that exists only in the Ex-ray plates will either go away or be overcome by my optimism and my life-long propensity for good fortune.
Dosdall (author Claude Dosdall) generalizes about the needs and responses of the “cancer-prone.” Does having cancer make me a “cancer-prone” by definition? Am I kidding myself?
Must I have a strong passion for life in order to survive?
Isn’t it enough just to like being alive- taking each day as it comes and enjoying whatever it offers?
continued in chapter 10: part 1
Friday, August 24, 2007
chapter 9: part 3
continued from chapter 9: part 2
If you feel stressed simply coping with your cancer, consider seeing a psychologist or psychiatrist or a well-recommended counselor. I learned of one psychologist in our city who worked almost exclusively with cancer patients; some of our support group members took this route and felt it helped them. Don’t load yourself with more than you can take. But if you feel your cancer is crushing your spirit, then find a professional counselor to help you work your way through.
Be clear about your goals. Your goal is to make each day count, to be able to reach out and accept help and any love coming your way and to be able to handle the rough moments we all have.
Take your problems one at a time. If something comes up, deal with it while it’s one problem and then move on. Obviously if something monumental comes along then make sure your partner is steadfastly beside you while you work your way through this.
Don’t be complacent about your good days. Use them well. Enjoy the day but remember clearly you are changing, casting out the outmoded habits that will not enhance your life. A relaxed and serene peace of mind is your aim. Save the worrying for what might be.
Practice your mental imagery, and if that sounds too much like work, then call it daydreaming. Imagine yourself feeling well, gaining success with treatment. Imagine your immune system devouring the cancer and spitting it out. Do what feels right to you.
Anticipate some things that might come up later. For instance, Hal and I took advantage of the recuperative time to work out a plan for when he might not be feeling good. This is where my obsession for planning proved itself. How would we deal with a lack of appetite when his weight might be decreasing rapidly? We agreed that nagging and fussing was not going to work. Instead, we would figure out on a daily basis, the minimum amount he would require for the day, and he would decide what he would consume and when. The deal was that he had to take the required food but he would choose when and I would attempt to make it as nutritious, and in case of nausea, as odorless as possible. This worked well for us.
If you’re on your own, next time you’re at the clinic, ask to see the nutritionist and get advice about handling loss of appetite if and when it happens. You may be advised to have some easily prepared foods on hand or tinned liquid nutrients that are palatable if chilled.
Ironically, while we were making these plans, it was Christmas time and Hal had regained his weight and more, and voluntarily put himself on a sensible eating program.
A good way to monitor your own emotional progress is by keeping a journal of your experiences in your life and dreams. You’ll see improvement as you re-read. Yes, I do know this is the third journal I’ve suggested but you won’t regret doing this. This is a rebuilding time. You are preparing yourself physically and mentally to be responsive to the doctors treatment. Check back a month or two and you’ll see on paper just how much you’ve grown and strengthened in your way of living.
Self- help groups sprouted like toadstools in the late sixties and early seventies and they have gained credibility with many doctors treating cancer patients. In Toronto, when we were learning the ropes, Alistair Cunningham, a professor of medical biophysics at the University of Toronto and former cancer patient, established the best-known groups. He ran the groups at the Cancer hospital where Hal went for his clinic visits. At first the groups were intended only for the person with cancer but the caregivers made it clear they were coming and staying, so they became part of the program.
The groups certainly had value for many of the patients attending; they had an opportunity to talk out their fears with their own small sub- group in the care of a trained leader. Each session lasted two hours a week for a period of six weeks, and you could move on to the intermediate and finally senior stage.
The sessions begin with a relaxation exercise, and I never ceased to marvel at the tightness I brought into the room and felt it melt away as the exercise progressed. Afterward, we broke into small permanent groups for an hour. The caregivers had their own group.
The caregivers benefited from the group as much or more than our husbands did; we gained a lot of strength from it and that indirectly helped the spouses.
We had questions we didn't want to ask in front of our spouses, about future obstacles we might face. Fortunately our group leaders were always generous with their time to take phone calls or meet privately for a few minutes after a session, to answer troubling questions.
To all caregivers reading this, if your partner isn’t interested in joining a self help group, find a group for you; you both need it but you in particular need a place to let loose. After all, your partner has more opportunity to express himself but you don’t.
My first and only surprise when we joined the group was the attending couples in bad marriages. Their incompatibility quickly became obvious. I wonder if one or both got anything from being there.
Here’s a note about helping your partner—if you are on heavy medication such as morphine, stop driving the car. Never once did a doctor mention this obvious fact and during support group sessions, we all discussed the close calls we’d had because our mates weren’t aware that their senses were dulled. Wives never seem able to tackle this one. Seek out a doctor, or in our case, a visiting nurse, who did lay down the law.
continued in chapter 9: part 4
If you feel stressed simply coping with your cancer, consider seeing a psychologist or psychiatrist or a well-recommended counselor. I learned of one psychologist in our city who worked almost exclusively with cancer patients; some of our support group members took this route and felt it helped them. Don’t load yourself with more than you can take. But if you feel your cancer is crushing your spirit, then find a professional counselor to help you work your way through.
Be clear about your goals. Your goal is to make each day count, to be able to reach out and accept help and any love coming your way and to be able to handle the rough moments we all have.
Take your problems one at a time. If something comes up, deal with it while it’s one problem and then move on. Obviously if something monumental comes along then make sure your partner is steadfastly beside you while you work your way through this.
Don’t be complacent about your good days. Use them well. Enjoy the day but remember clearly you are changing, casting out the outmoded habits that will not enhance your life. A relaxed and serene peace of mind is your aim. Save the worrying for what might be.
Practice your mental imagery, and if that sounds too much like work, then call it daydreaming. Imagine yourself feeling well, gaining success with treatment. Imagine your immune system devouring the cancer and spitting it out. Do what feels right to you.
Anticipate some things that might come up later. For instance, Hal and I took advantage of the recuperative time to work out a plan for when he might not be feeling good. This is where my obsession for planning proved itself. How would we deal with a lack of appetite when his weight might be decreasing rapidly? We agreed that nagging and fussing was not going to work. Instead, we would figure out on a daily basis, the minimum amount he would require for the day, and he would decide what he would consume and when. The deal was that he had to take the required food but he would choose when and I would attempt to make it as nutritious, and in case of nausea, as odorless as possible. This worked well for us.
If you’re on your own, next time you’re at the clinic, ask to see the nutritionist and get advice about handling loss of appetite if and when it happens. You may be advised to have some easily prepared foods on hand or tinned liquid nutrients that are palatable if chilled.
Ironically, while we were making these plans, it was Christmas time and Hal had regained his weight and more, and voluntarily put himself on a sensible eating program.
A good way to monitor your own emotional progress is by keeping a journal of your experiences in your life and dreams. You’ll see improvement as you re-read. Yes, I do know this is the third journal I’ve suggested but you won’t regret doing this. This is a rebuilding time. You are preparing yourself physically and mentally to be responsive to the doctors treatment. Check back a month or two and you’ll see on paper just how much you’ve grown and strengthened in your way of living.
Self- help groups sprouted like toadstools in the late sixties and early seventies and they have gained credibility with many doctors treating cancer patients. In Toronto, when we were learning the ropes, Alistair Cunningham, a professor of medical biophysics at the University of Toronto and former cancer patient, established the best-known groups. He ran the groups at the Cancer hospital where Hal went for his clinic visits. At first the groups were intended only for the person with cancer but the caregivers made it clear they were coming and staying, so they became part of the program.
The groups certainly had value for many of the patients attending; they had an opportunity to talk out their fears with their own small sub- group in the care of a trained leader. Each session lasted two hours a week for a period of six weeks, and you could move on to the intermediate and finally senior stage.
The sessions begin with a relaxation exercise, and I never ceased to marvel at the tightness I brought into the room and felt it melt away as the exercise progressed. Afterward, we broke into small permanent groups for an hour. The caregivers had their own group.
The caregivers benefited from the group as much or more than our husbands did; we gained a lot of strength from it and that indirectly helped the spouses.
We had questions we didn't want to ask in front of our spouses, about future obstacles we might face. Fortunately our group leaders were always generous with their time to take phone calls or meet privately for a few minutes after a session, to answer troubling questions.
To all caregivers reading this, if your partner isn’t interested in joining a self help group, find a group for you; you both need it but you in particular need a place to let loose. After all, your partner has more opportunity to express himself but you don’t.
My first and only surprise when we joined the group was the attending couples in bad marriages. Their incompatibility quickly became obvious. I wonder if one or both got anything from being there.
Here’s a note about helping your partner—if you are on heavy medication such as morphine, stop driving the car. Never once did a doctor mention this obvious fact and during support group sessions, we all discussed the close calls we’d had because our mates weren’t aware that their senses were dulled. Wives never seem able to tackle this one. Seek out a doctor, or in our case, a visiting nurse, who did lay down the law.
continued in chapter 9: part 4
Thursday, August 23, 2007
chapter 9: part 2
continued from chapter 9: part 1
Never ever permit yourself to feel helpless; do whatever it takes to stay in control. There are many ways to help yourself and you’ll have thought of many I hadn’t mentioned. This is your own personal pep rally; just think about choices you can make; you’re reading up on your cancer, you’re asking questions and you’re proving with each step you take that you’re not ready to leave your life in the hands of others.
Until someone can prove differently, medical treatment is the first and best line of defense but you can augment its effects and strengthen your body’s natural defense mechanism with a variety of mental techniques and approaches. Stress promotes disease. Nothing you do for the better is guaranteed but it’s never too late to get rid of bad habits and outmoded behavior patterns.
Victor, a member of one of our support groups, was a thirty- something man who hadn’t been married for long before his lung cancer was diagnosed and he lost a lobe to surgery. He gave himself a few days to rest at home, then he began walking up and down the stairs, just enough to feel the pressure, but not enough to sap his strength. Slowly, he worked his way from the stairs, to walking from the door to the sidewalk and finally to jogging, taker longer and longer strides. He was last seen taking a bicycle tour in Europe.
He was always a fitness-minded person, and even though there are signs of cancer in the other lung, he firmly believes that as long as he feels well, he will keep up the exercise and keep his body toned. His attitude will keep him going for a long time.
I hope you’re feeling good about the things you’re doing for yourself and yet you may be thirsting for more, so then reach out further.
We were encouraged by Doctor Bernie Siegal’s excellent books and we received “success” books from friends. We'd looked into the secret serums and miracle cures and magic diets and quickly rejected them. What else?
Sort through those self-help books and pick out the things that you can relate to; most recommend various mental exercises to promote a feeling of serenity and calmness. Gift yourself with some quiet time daily for quiet contemplation and centering. You begin with deep breathing and then you focus your attention on the spot between your closed eyes, sometimes called the third eye. Scan your body for tension. Begin with the top of your head and work your way down to loosen the tightness. Quiet the mind. There is no right way or wrong way. You want to feel comfortable and relaxed and your mind is at peace.
Do you laugh easily? Work on that. Your immune system likes laughter and you want to give it every break. We both got through a lot of tough times by using humor; we poked gentle humor at our situation and we searched out book, films, theatre, anything that would make us laugh, including friends who made us feel good and shared our kind of humor. One winning choice was the purchase of the Fawlty Tower tapes; they could always make Hal laugh, no matter how often he saw them.
Do things you enjoy. Read, walk, play tennis, visit the museum, libraries, the park, auctions, the list is endless. This is important-when you go to bed at night, play back your day and savor the things you did to reach out.
What sort of experiences and events have you been curious about but you were saving to explore during your retirement? Start now, pick away at it.
We gravitated more and more toward pleasurable things, in work and recreation time. Hal was wildly enthusiastic about the new house we would soon be moving into and spent hours poring over the house plans for furniture placement. We had too much furniture from those years of auctions and we worked on a room- by- room plan of what had to be sold, and still, we took too much with us. He was confident that his doctor was monitoring his condition carefully, he was careful to exercise and get enough rest and he was cheerfully looking forward to arranging the new house.
Here’s an exercise my friend Matthew practiced each morning. While he was brushing his teeth, he’d take a good look at his face in the mirror and then began a dialogue with himself. “Hi face, you look pretty good this morning. Today we’re going to meet anything that comes with the serenity that we feel deep inside.” Sure, it’s nutty and you’d be embarrassed if anyone saw you at this, but you are the most important person in your world right now and that face in the mirror has to be a valuable friend to get you through.
continued in chapter 9: part 3
Never ever permit yourself to feel helpless; do whatever it takes to stay in control. There are many ways to help yourself and you’ll have thought of many I hadn’t mentioned. This is your own personal pep rally; just think about choices you can make; you’re reading up on your cancer, you’re asking questions and you’re proving with each step you take that you’re not ready to leave your life in the hands of others.
Until someone can prove differently, medical treatment is the first and best line of defense but you can augment its effects and strengthen your body’s natural defense mechanism with a variety of mental techniques and approaches. Stress promotes disease. Nothing you do for the better is guaranteed but it’s never too late to get rid of bad habits and outmoded behavior patterns.
Victor, a member of one of our support groups, was a thirty- something man who hadn’t been married for long before his lung cancer was diagnosed and he lost a lobe to surgery. He gave himself a few days to rest at home, then he began walking up and down the stairs, just enough to feel the pressure, but not enough to sap his strength. Slowly, he worked his way from the stairs, to walking from the door to the sidewalk and finally to jogging, taker longer and longer strides. He was last seen taking a bicycle tour in Europe.
He was always a fitness-minded person, and even though there are signs of cancer in the other lung, he firmly believes that as long as he feels well, he will keep up the exercise and keep his body toned. His attitude will keep him going for a long time.
I hope you’re feeling good about the things you’re doing for yourself and yet you may be thirsting for more, so then reach out further.
We were encouraged by Doctor Bernie Siegal’s excellent books and we received “success” books from friends. We'd looked into the secret serums and miracle cures and magic diets and quickly rejected them. What else?
Sort through those self-help books and pick out the things that you can relate to; most recommend various mental exercises to promote a feeling of serenity and calmness. Gift yourself with some quiet time daily for quiet contemplation and centering. You begin with deep breathing and then you focus your attention on the spot between your closed eyes, sometimes called the third eye. Scan your body for tension. Begin with the top of your head and work your way down to loosen the tightness. Quiet the mind. There is no right way or wrong way. You want to feel comfortable and relaxed and your mind is at peace.
Do you laugh easily? Work on that. Your immune system likes laughter and you want to give it every break. We both got through a lot of tough times by using humor; we poked gentle humor at our situation and we searched out book, films, theatre, anything that would make us laugh, including friends who made us feel good and shared our kind of humor. One winning choice was the purchase of the Fawlty Tower tapes; they could always make Hal laugh, no matter how often he saw them.
Do things you enjoy. Read, walk, play tennis, visit the museum, libraries, the park, auctions, the list is endless. This is important-when you go to bed at night, play back your day and savor the things you did to reach out.
What sort of experiences and events have you been curious about but you were saving to explore during your retirement? Start now, pick away at it.
We gravitated more and more toward pleasurable things, in work and recreation time. Hal was wildly enthusiastic about the new house we would soon be moving into and spent hours poring over the house plans for furniture placement. We had too much furniture from those years of auctions and we worked on a room- by- room plan of what had to be sold, and still, we took too much with us. He was confident that his doctor was monitoring his condition carefully, he was careful to exercise and get enough rest and he was cheerfully looking forward to arranging the new house.
Here’s an exercise my friend Matthew practiced each morning. While he was brushing his teeth, he’d take a good look at his face in the mirror and then began a dialogue with himself. “Hi face, you look pretty good this morning. Today we’re going to meet anything that comes with the serenity that we feel deep inside.” Sure, it’s nutty and you’d be embarrassed if anyone saw you at this, but you are the most important person in your world right now and that face in the mirror has to be a valuable friend to get you through.
continued in chapter 9: part 3
Wednesday, August 22, 2007
chapter 9: part 1 SELF -HELP
continued from Chapter 8: part 8
It was always clear in our minds that Hal would combine his medical treatment with self-help but first we had to find out what that meant. A positive attitude? More than that? We didn’t know.
We thought a lot about the doctors’ view of when to begin treatment. The doctor's credo seemed to be, "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 left our casual drop-in group to join a more active group run by a psychologist in the cancer hospital. 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. Through the new group we discovered various self-help techniques such as positive imagery where you imagine yourself into getting well.
We were always openly curious about the way things work and it was natural for us to ask questions and search out other people who were learning to deal with their cancer.
Not everyone is able to publicly bare their private selves; they are anxious to maintain control and help themselves, but they want their privacy. If you’re one of these people, you’ll find ideas in this chapter about what you can do to help yourself while maintaining your privacy.
Privacy wasn’t a big issue with us but we were clear that we had to make some changes while Hal felt well.
A lot of personal house cleaning happens when you connect with cancer. You may have already begun by discarding outmoded habits that are no longer useful, replacing them with new habits that will benefit your health and your feeling of self-esteem. You’ve placed yourself in the hands of a medical team, you may have a partner in place and you may have told some or all of your friends about your cancer. You may also have begun attending cancer group meetings or informal drop-ins. You’re taking a closer look at relationships that give you pleasure and also pain.
A few of our new friends in the group were avid about following macrobiotic diets 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.
You can make further advances by concentrating on the foods you eat, ensuring they provide you with the best possible nutrition, by doing daily exercises that suit you, taking proper medication, getting enough rest and relaxing your body and mind through whatever is your relaxing agent. Learn to “listen” to your body. Follow the basic nutrition guides and if the combination of two foods causes an upset, make a note to eat them separately, or eliminate one as long as you balance the nutrients some other way. If you go through loss of appetite and feel a slight urge for food at three in the morning, ask your partner for a small milkshake or whatever you can handle and that can be produced quickly.
continued in chapter 9: part 2
It was always clear in our minds that Hal would combine his medical treatment with self-help but first we had to find out what that meant. A positive attitude? More than that? We didn’t know.
We thought a lot about the doctors’ view of when to begin treatment. The doctor's credo seemed to be, "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 left our casual drop-in group to join a more active group run by a psychologist in the cancer hospital. 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. Through the new group we discovered various self-help techniques such as positive imagery where you imagine yourself into getting well.
We were always openly curious about the way things work and it was natural for us to ask questions and search out other people who were learning to deal with their cancer.
Not everyone is able to publicly bare their private selves; they are anxious to maintain control and help themselves, but they want their privacy. If you’re one of these people, you’ll find ideas in this chapter about what you can do to help yourself while maintaining your privacy.
Privacy wasn’t a big issue with us but we were clear that we had to make some changes while Hal felt well.
A lot of personal house cleaning happens when you connect with cancer. You may have already begun by discarding outmoded habits that are no longer useful, replacing them with new habits that will benefit your health and your feeling of self-esteem. You’ve placed yourself in the hands of a medical team, you may have a partner in place and you may have told some or all of your friends about your cancer. You may also have begun attending cancer group meetings or informal drop-ins. You’re taking a closer look at relationships that give you pleasure and also pain.
A few of our new friends in the group were avid about following macrobiotic diets 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.
You can make further advances by concentrating on the foods you eat, ensuring they provide you with the best possible nutrition, by doing daily exercises that suit you, taking proper medication, getting enough rest and relaxing your body and mind through whatever is your relaxing agent. Learn to “listen” to your body. Follow the basic nutrition guides and if the combination of two foods causes an upset, make a note to eat them separately, or eliminate one as long as you balance the nutrients some other way. If you go through loss of appetite and feel a slight urge for food at three in the morning, ask your partner for a small milkshake or whatever you can handle and that can be produced quickly.
continued in chapter 9: part 2
Tuesday, August 21, 2007
Chapter 8: part 8
continued from chapter 8: part 7
Volunteers are easily identified by their stand-out uniforms and you'll often find them pushing carts with tea, coffee and biscuits. They'll stop to help you find your way through the corridors and clue you in on any short cuts around the place. They also seem to have an unwritten law that no matter how edgy patients may get waiting bone-weary times to see the doctor, volunteers will treat them with unfailing tact and kindness.
About parking. It costs you to leave the car in the vicinity of the clinic, right? Well, usually, but not always. It's worth your while to scout the area by car a day or two in advance (Sundays are best) to see where the meter-free places are. I found a street nearby that had two-hour meters, and I never got a ticket, and frankly I didn't feel I deserved one. Consider the extra walk a good form of exercise.
And there's attitude. Yes, you do need to develop a positive approach to this new experience. The first time we came to the clinic I was worried about what I might see. I think my mind had regressed to those childhood films about leper colonies and civil war horror hospitals.
Would I see masses of bald, ghastly pale, quivering people who might collapse on the floor in front of me? I knew there would a pervasive feeling of sorrow.
Wrong. In reality it's more like the average crowd in a hotel lobby. There are skinny people around if you take the time to search them out, but the normalcy of the place is what strikes you first. The worst thing I ever saw was a big clump of human hair on the floor by my feet. Big deal; so think of the times you saw the same thing in the barber shop when your kid was overdue for a haircut. And it does grow back.
A good sense of humor can get you through anything. If you haven't got one, skip this part; I'm not sure you can fake it. We polished up our Gothic humor, which does seem to come with the territory. We used to play a game to see which person in the waiting area had the cancer. We guessed wrong countless times because the caregiver partner was often the one looking pinched and worried and neglecting his or her health. We also tried our hand at diagnosis as we got more sophisticated; what kind of cancer does the man in the brown suit have? If you practice your friendly approach you'll find out; we never met a patient who was shy about discussing the matter. Look, what else is there to do? This isn't the time to concentrate on anything more intellectual; you want to keep your main focus on your coming meeting with the doctor.
One of the "best" clinic visits we had was when I made a discovery out of necessity. Hal's legs developed blood clots and this coincided with his regular clinic visit. He couldn't walk without help and I was trying to figure out how to manage when I got to the clinic.
I pulled the car up to the driveway entrance and an attendant hurried forward with a smile. "Hello their little lady, need a wheelchair?" he asked as he opened the door. Now in normal times a person addressing me as little lady would receive an unladylike reply but I was so grateful for the help he could have got away with practically anything. He produced a chair and had Hal tucked in and wheeled inside the lobby while I parked the car in a lot across the street. And yes, this time I paid.
Instead of the usual way of slowly working our way through, we had a great time zipping through the corridors and people even held elevators for us. We got a good-sized examining room with extra chairs so that we could spread out while we waited for the doctor. Oh joy. On a day that your partner is particularly weary, try to round up a wheelchair at the clinic, to travel with more comfort.
Plan your clinic visit carefully, consider what you'll take, what you'll wear, food and medication to bring, your diary of symptoms and questions and most important, bring your peace of mind.
CHECK LIST FOR CLINIC OR DOCTOR VISIT
DOCTOR notebook with questions of the day written out and space left for answers.
DIARY to record in chronological detail every step of your diagnosis and treatment. This is your own personal medical chart.
DRESS for comfort and easy clothing removal and bring an extra sweater for warmth during wait in examining room.
MEDICATION. Be sure to bring some extra in case of delays.
READING MATERIALS. Bring games, cards, anything to pass the time.
SANDWICHES, a thermos of coffee or juice, just in case.
EMERGENCY KIT. Be sure the emergency barf kit is in place in the car.
MONEY. Have change on hand for parking, vending machines and phone calls.
CARRYALL. To hold most of the above.
continued in chapter 9: part 1
Volunteers are easily identified by their stand-out uniforms and you'll often find them pushing carts with tea, coffee and biscuits. They'll stop to help you find your way through the corridors and clue you in on any short cuts around the place. They also seem to have an unwritten law that no matter how edgy patients may get waiting bone-weary times to see the doctor, volunteers will treat them with unfailing tact and kindness.
About parking. It costs you to leave the car in the vicinity of the clinic, right? Well, usually, but not always. It's worth your while to scout the area by car a day or two in advance (Sundays are best) to see where the meter-free places are. I found a street nearby that had two-hour meters, and I never got a ticket, and frankly I didn't feel I deserved one. Consider the extra walk a good form of exercise.
And there's attitude. Yes, you do need to develop a positive approach to this new experience. The first time we came to the clinic I was worried about what I might see. I think my mind had regressed to those childhood films about leper colonies and civil war horror hospitals.
Would I see masses of bald, ghastly pale, quivering people who might collapse on the floor in front of me? I knew there would a pervasive feeling of sorrow.
Wrong. In reality it's more like the average crowd in a hotel lobby. There are skinny people around if you take the time to search them out, but the normalcy of the place is what strikes you first. The worst thing I ever saw was a big clump of human hair on the floor by my feet. Big deal; so think of the times you saw the same thing in the barber shop when your kid was overdue for a haircut. And it does grow back.
A good sense of humor can get you through anything. If you haven't got one, skip this part; I'm not sure you can fake it. We polished up our Gothic humor, which does seem to come with the territory. We used to play a game to see which person in the waiting area had the cancer. We guessed wrong countless times because the caregiver partner was often the one looking pinched and worried and neglecting his or her health. We also tried our hand at diagnosis as we got more sophisticated; what kind of cancer does the man in the brown suit have? If you practice your friendly approach you'll find out; we never met a patient who was shy about discussing the matter. Look, what else is there to do? This isn't the time to concentrate on anything more intellectual; you want to keep your main focus on your coming meeting with the doctor.
One of the "best" clinic visits we had was when I made a discovery out of necessity. Hal's legs developed blood clots and this coincided with his regular clinic visit. He couldn't walk without help and I was trying to figure out how to manage when I got to the clinic.
I pulled the car up to the driveway entrance and an attendant hurried forward with a smile. "Hello their little lady, need a wheelchair?" he asked as he opened the door. Now in normal times a person addressing me as little lady would receive an unladylike reply but I was so grateful for the help he could have got away with practically anything. He produced a chair and had Hal tucked in and wheeled inside the lobby while I parked the car in a lot across the street. And yes, this time I paid.
Instead of the usual way of slowly working our way through, we had a great time zipping through the corridors and people even held elevators for us. We got a good-sized examining room with extra chairs so that we could spread out while we waited for the doctor. Oh joy. On a day that your partner is particularly weary, try to round up a wheelchair at the clinic, to travel with more comfort.
Plan your clinic visit carefully, consider what you'll take, what you'll wear, food and medication to bring, your diary of symptoms and questions and most important, bring your peace of mind.
CHECK LIST FOR CLINIC OR DOCTOR VISIT
DOCTOR notebook with questions of the day written out and space left for answers.
DIARY to record in chronological detail every step of your diagnosis and treatment. This is your own personal medical chart.
DRESS for comfort and easy clothing removal and bring an extra sweater for warmth during wait in examining room.
MEDICATION. Be sure to bring some extra in case of delays.
READING MATERIALS. Bring games, cards, anything to pass the time.
SANDWICHES, a thermos of coffee or juice, just in case.
EMERGENCY KIT. Be sure the emergency barf kit is in place in the car.
MONEY. Have change on hand for parking, vending machines and phone calls.
CARRYALL. To hold most of the above.
continued in chapter 9: part 1
Monday, August 20, 2007
chapter 8: part 7
continued from chapter 8: part6
Now we come to an essential item, how to carry all these essentials you bring along for doctor visits.
The first time you arrive at the clinic you'll swear you've happened upon a haven for bag- people seeking shelter from the elements. The men are less guilty of this but everywhere you look, people are clutching plastic bags that easily slip out of their grasp if they're juggling more than one. Stuffed inside, if you cared to look, would be some of the things I am going to list for you.
Here's what you do. You seek out a store selling light-weight canvas or leather bags of all sizes and you invest in one that can be carried without embarrassment by either man or woman. Make sure it has compartments, preferably one that is water proof in case of spills. Memorize your packing method so you can put your hands on whatever you want without unloading the whole works. When your name is called for whatever step comes next, you'll be better prepared to repack the paper backs and thermos without flustering with the plastic.
There is a always a cafeteria where you can buy food but in case you might be pressed for time to get to the next test or examination, bring a sandwich, fruit and a drink. There are lots of places to sit and eat, and in a cancer hospital, chances are people will smile at anyone showing an appetite.
Boredom comes hand -in- glove with these visits. We always looked around first to see anyone we recognized from other visits--we cared that these people kept coming back. That meant they were okay, as Hal was. Bring along a book or two, preferably light reading. I brought paperback mysteries and Hal the computer junky often brought computer manuals. (These were the early-on computer days.)
Hal also always carried a notepad and pen and often thought of work-related ideas he immediately jotted down. Trivial Pursuit cards can get you through; you don't need the board, just quiz each other, and sometimes you can interest another bored couple to join in. If you do come unprepared, use the time to practice your now more outgoing personality and deliberately chat up the others waiting with you.
If you want to be a sport, bring an armload of the magazines you are finished with; we're all familiar with waiting rooms so you'll know why your act is a kind one. Take a few minutes to re-check the questions you will be asking the doctor, and don't even consider leaving anything off just because you haven't anything else to do. Keep the questions intact because you had a good reason to put them there in the first place.
continued in Chapter 8: part 8
Now we come to an essential item, how to carry all these essentials you bring along for doctor visits.
The first time you arrive at the clinic you'll swear you've happened upon a haven for bag- people seeking shelter from the elements. The men are less guilty of this but everywhere you look, people are clutching plastic bags that easily slip out of their grasp if they're juggling more than one. Stuffed inside, if you cared to look, would be some of the things I am going to list for you.
Here's what you do. You seek out a store selling light-weight canvas or leather bags of all sizes and you invest in one that can be carried without embarrassment by either man or woman. Make sure it has compartments, preferably one that is water proof in case of spills. Memorize your packing method so you can put your hands on whatever you want without unloading the whole works. When your name is called for whatever step comes next, you'll be better prepared to repack the paper backs and thermos without flustering with the plastic.
There is a always a cafeteria where you can buy food but in case you might be pressed for time to get to the next test or examination, bring a sandwich, fruit and a drink. There are lots of places to sit and eat, and in a cancer hospital, chances are people will smile at anyone showing an appetite.
Boredom comes hand -in- glove with these visits. We always looked around first to see anyone we recognized from other visits--we cared that these people kept coming back. That meant they were okay, as Hal was. Bring along a book or two, preferably light reading. I brought paperback mysteries and Hal the computer junky often brought computer manuals. (These were the early-on computer days.)
Hal also always carried a notepad and pen and often thought of work-related ideas he immediately jotted down. Trivial Pursuit cards can get you through; you don't need the board, just quiz each other, and sometimes you can interest another bored couple to join in. If you do come unprepared, use the time to practice your now more outgoing personality and deliberately chat up the others waiting with you.
If you want to be a sport, bring an armload of the magazines you are finished with; we're all familiar with waiting rooms so you'll know why your act is a kind one. Take a few minutes to re-check the questions you will be asking the doctor, and don't even consider leaving anything off just because you haven't anything else to do. Keep the questions intact because you had a good reason to put them there in the first place.
continued in Chapter 8: part 8
Friday, August 17, 2007
chapter 8: part 6
continued from Chapter 8: part 5
We learned never to leave the house without bringing along a couple of extra doses of medication, in case we were delayed getting home. We found small plastic containers with snap on lids, resembling baby food jars, to carry Hal's liquid morphine whenever we went out in the car, and juice or ice water for the dry mouth that often follows chemotherapy.
These were the days before those handy juice boxes.
Your medication may change frequently, so you might be wise to carry your pills in their original containers rather than putting the current dosage in those flat plastic pill cases you pick up in the drug store. This is not the time to confuse your medication and if you happen to be on pain killers, it is possible to get muddled.
You may be fortunate enough to breeze through chemotherapy with minor discomfort, but just in case, store some readily accessible some barf bags in the car where they're readily accessible. A clean top or sweater is advisable in case of need. Fortunately we never used them but we were glad to have them along.
You can always spot the clinic first-timers by their clothing. They dress without regard to the effort involved in getting those clothes back on without anyone to help zip up that long back opening or do up the fifty- four buttons. They nervously make comments about the taste of barium before the CAT scan, they don't carry reading materials or medication and complain about the waste of time and what might be going on at the office without them. All valid problems and worries, and after a while they'll settle into routine and recognize the value of overcoming this new challenge.
Hal prepared by dressing for comfort and ease; he wanted to slide up the sleeves for blood tests and undress easily for his examination. He'd change into a short robe while waiting for the doctor and because those waiting rooms often felt chilly, we brought a cardigan or two to cover his legs. His feet were comfortable because he had a lifelong passion for Wallabies, a shoe intended for casual wear only. I'm grateful he didn't know about them years before when we were married in a formal ceremony.
The point is, he was comfortable in those shoes, and his legs didn't tire.
I quickly learned to dress for total comfort, leaving me free and unencumbered to concentrate on Hal's needs. As time wore on, I gave up the nylons and coordinated outfits and wore pants, sweaters and sneakers, my house uniform.
continued in chapter 8: part7
We learned never to leave the house without bringing along a couple of extra doses of medication, in case we were delayed getting home. We found small plastic containers with snap on lids, resembling baby food jars, to carry Hal's liquid morphine whenever we went out in the car, and juice or ice water for the dry mouth that often follows chemotherapy.
These were the days before those handy juice boxes.
Your medication may change frequently, so you might be wise to carry your pills in their original containers rather than putting the current dosage in those flat plastic pill cases you pick up in the drug store. This is not the time to confuse your medication and if you happen to be on pain killers, it is possible to get muddled.
You may be fortunate enough to breeze through chemotherapy with minor discomfort, but just in case, store some readily accessible some barf bags in the car where they're readily accessible. A clean top or sweater is advisable in case of need. Fortunately we never used them but we were glad to have them along.
You can always spot the clinic first-timers by their clothing. They dress without regard to the effort involved in getting those clothes back on without anyone to help zip up that long back opening or do up the fifty- four buttons. They nervously make comments about the taste of barium before the CAT scan, they don't carry reading materials or medication and complain about the waste of time and what might be going on at the office without them. All valid problems and worries, and after a while they'll settle into routine and recognize the value of overcoming this new challenge.
Hal prepared by dressing for comfort and ease; he wanted to slide up the sleeves for blood tests and undress easily for his examination. He'd change into a short robe while waiting for the doctor and because those waiting rooms often felt chilly, we brought a cardigan or two to cover his legs. His feet were comfortable because he had a lifelong passion for Wallabies, a shoe intended for casual wear only. I'm grateful he didn't know about them years before when we were married in a formal ceremony.
The point is, he was comfortable in those shoes, and his legs didn't tire.
I quickly learned to dress for total comfort, leaving me free and unencumbered to concentrate on Hal's needs. As time wore on, I gave up the nylons and coordinated outfits and wore pants, sweaters and sneakers, my house uniform.
continued in chapter 8: part7
Thursday, August 16, 2007
chapter 8: part 5
continued from chapter 8: part 4
You're thinking about the kind of impact you're making on the medical people caring for you and you're working at making this successful. The remainder of this chapter will give you step-by-step help to guard against the boredom and frustration that are often a part of clinic day or doctor day; whichever system, these rules will still apply.
Rule number one gives a quick pay- off by ensuring your peace of mind. If you live in the same city as your treatment centre, arrange to come in for any tests a couple of days before your doctor appointment, so that the results will be in his hands by then. Otherwise, nagging at your consciousness is the unsettling question: did something bad show up on the tests? You might have to wait up to six weeks for your next appointment before you get the answer. If you can't come in ahead, arrange to phone your doctor or his designate for the results at a prescribed time. You have every right to be forceful about this.
We learned this lesson the hard way when Hal's day-of-clinic Ex- Rays indicated a spread of the disease and we didn't learn of this until the next visit, when the doctor mentioned it casually, as if we already knew. Now Hal didn't miss out on essential treatment because of the delay, but we lost that feeling of control and trust for a while, and that feeling can't be allowed to happen. When did the doctor learn of this? Wasn't it important enough to tell us immediately? Or did it matter in the long run? It did to us.
Next, on clinic visit day, don't make lunch or business appointments because you can count on being there for anywhere up to three hours. On the first visit or two, you'll be busy memorizing how to get from ex ray to blood tests to examining room, but once that's done, you become one of the regulars and you'll probably find yourself fighting both anxiety and impatience.
Go out and buy a couple of lined notebooks, like the scribblers you had at school, or the hard cover blank- paged ones in the book stores. These will be your medical records. Label one book, "DIARY", which will be a brief chronological report beginning with the date of your diagnosis, all treatments and tests that have been done to date and any significant changes in your health. To make it easier to read, get a book with a margin for the dates of each entry. At the same time, beginning with the back page and working forward, keep track of every prescription and whether the drug is still being used.
In Hal's case, after his surgery he felt wonderful, returned to work and didn't have another serious symptom for almost seven months so his book would have been pleasantly bare for that time, if we'd had the foresight to use this system.
Book number two can be labelled "QUESTIONS" and is intended strictly as preparation for the next checkup. In this book you transfer in exactly what changes have been recorded in book number one since the last visit and then list every question you want to ask the doctor. You don't think you'll forget to mention important things, but in the heat of working your way through the various tests and departments, you may need to refresh your memory. Be sure to bring this book with you. Give it a name and don't leave home without it. Don't be afraid to take the time to jot down some answers, and again, use team work and decide in advance which one of you asks the questions and which one writes down the replies.
What you're doing is keeping your own chart of your cancer and if at some time you are confined to hospital, the two of you can keep better track of what is going on by doing your own charting. You may be reminded through those pages of some medication or treatment that worked for the same symptoms in the past and you can ask about trying it again. In all fairness, you can't expect the doctor to re-read each page on your ever-growing chart and you have a vested interest in keeping involved. If you don't feel up to it, your partner is there to help.
I have a friend with Hodgkin's disease, and from the onset, she has requested and been given copies of all her test and ex ray results. She has even been able to show her doctor, through graphs, which medication works best for her. You can be sure her doctor re-reads his notes before tackling her.
continued in chapter 8: part 6
You're thinking about the kind of impact you're making on the medical people caring for you and you're working at making this successful. The remainder of this chapter will give you step-by-step help to guard against the boredom and frustration that are often a part of clinic day or doctor day; whichever system, these rules will still apply.
Rule number one gives a quick pay- off by ensuring your peace of mind. If you live in the same city as your treatment centre, arrange to come in for any tests a couple of days before your doctor appointment, so that the results will be in his hands by then. Otherwise, nagging at your consciousness is the unsettling question: did something bad show up on the tests? You might have to wait up to six weeks for your next appointment before you get the answer. If you can't come in ahead, arrange to phone your doctor or his designate for the results at a prescribed time. You have every right to be forceful about this.
We learned this lesson the hard way when Hal's day-of-clinic Ex- Rays indicated a spread of the disease and we didn't learn of this until the next visit, when the doctor mentioned it casually, as if we already knew. Now Hal didn't miss out on essential treatment because of the delay, but we lost that feeling of control and trust for a while, and that feeling can't be allowed to happen. When did the doctor learn of this? Wasn't it important enough to tell us immediately? Or did it matter in the long run? It did to us.
Next, on clinic visit day, don't make lunch or business appointments because you can count on being there for anywhere up to three hours. On the first visit or two, you'll be busy memorizing how to get from ex ray to blood tests to examining room, but once that's done, you become one of the regulars and you'll probably find yourself fighting both anxiety and impatience.
Go out and buy a couple of lined notebooks, like the scribblers you had at school, or the hard cover blank- paged ones in the book stores. These will be your medical records. Label one book, "DIARY", which will be a brief chronological report beginning with the date of your diagnosis, all treatments and tests that have been done to date and any significant changes in your health. To make it easier to read, get a book with a margin for the dates of each entry. At the same time, beginning with the back page and working forward, keep track of every prescription and whether the drug is still being used.
In Hal's case, after his surgery he felt wonderful, returned to work and didn't have another serious symptom for almost seven months so his book would have been pleasantly bare for that time, if we'd had the foresight to use this system.
Book number two can be labelled "QUESTIONS" and is intended strictly as preparation for the next checkup. In this book you transfer in exactly what changes have been recorded in book number one since the last visit and then list every question you want to ask the doctor. You don't think you'll forget to mention important things, but in the heat of working your way through the various tests and departments, you may need to refresh your memory. Be sure to bring this book with you. Give it a name and don't leave home without it. Don't be afraid to take the time to jot down some answers, and again, use team work and decide in advance which one of you asks the questions and which one writes down the replies.
What you're doing is keeping your own chart of your cancer and if at some time you are confined to hospital, the two of you can keep better track of what is going on by doing your own charting. You may be reminded through those pages of some medication or treatment that worked for the same symptoms in the past and you can ask about trying it again. In all fairness, you can't expect the doctor to re-read each page on your ever-growing chart and you have a vested interest in keeping involved. If you don't feel up to it, your partner is there to help.
I have a friend with Hodgkin's disease, and from the onset, she has requested and been given copies of all her test and ex ray results. She has even been able to show her doctor, through graphs, which medication works best for her. You can be sure her doctor re-reads his notes before tackling her.
continued in chapter 8: part 6
Wednesday, August 15, 2007
chapter 8: part 4
continued from chapter 8: part 3
Hal expected that his reporter listening skills would be an advantage to establish rapport with the medical staff but he hadn't counted on the Catch 22 of clinics; you won't a;ways see "your" doctor each visit.
The Oncologist has a back-up team of qualified residents who share the assignments, so you never know until clinic day which one you will be seeing. This can be a big obstacle, doubly so if you're not prepared for a substitute and you'll want to think carefully about what you want to accomplish with the doctor of-the-day. This system calls for more flexibility on your part and you may have to adapt your personality to fit theirs to get the best out of the visit and to ensure that you understand one another. Too manipulative you think? You're shedding the no-longer-useful parts of your personality in order to gain this doctor's concentration on you and on your health and welfare. You're not going to change their system, but you have total control over the person they are treating.
Our first clinic visit to the cancer hospital was traumatic for me; Hal never expressed any emotion about it; he behaved matter-of-factly as though this was the next job on the agenda, so let's get on with it. You simply must forget the notion that you walk to the desk and announce you have a two o'clock appointment with your doctor. You might also have an appointment with the haemodialyses lab for the usual blood sample, or you may have an appointment for an ex ray, or a c.a.t. scan. or whatever. You will wait, that you can count on.
It begins the same way: you will check in at the admitting desk, then your file is pulled and sent to whichever clinic area you will be in that day. On Hal's first visit, a volunteer took us off to one side and offered coffee until he was taken in the admissions office to fill out some forms. His photo was taken and stapled to the back of his file, which was a practical way of comparing any changes in his appearance from visit to visit.
Next, the volunteer collected a batch of us newcomers and took us upstairs to the examination clinic. We sat in a crowded holding area and looked carefully around at our companions. Some of them looked skinny, some were in wheelchairs, some women wore those head covers, but by and large, it looked like a normal group. A volunteer called Hal's name and he went around the corner for a weigh-in. She told him his weight in metric, and when we converted it later, could see that his weight was up, probably ten pounds more than he liked.
The holding area is like being with family. You see familiar faces and there is an air of patience; we understand that delay mean one of us is getting special attention because it's needed. One day, you may claim that extra time, and for now you'll try not to begrudge the extra wait.
Eventually it will be your turn and the nurse will direct you to an examining room off the main corridor. Your job is to be thoroughly prepared for your doctor visit. Your trump card is the diary you bring with you, that I will describe in another chapter. It's also your backup system. During our first clinic visits we sometimes went home feeling dissatisfied, and when we analysed the visit over a cup of coffee we realized we hadn't asked the right questions. It's hard to know which question to ask. That's where the diary comes in. We always found that the doctor-of-the-day was unfailingly patient about answering questions and if we had known enough to bring the notebook with us, we would have been so much better prepared. You will have reviewed your questions in the waiting area. Using this method is the best of teamwork and chances are you'll leave satisfied that you've been heard.
continued in chapter 8: part 5
Hal expected that his reporter listening skills would be an advantage to establish rapport with the medical staff but he hadn't counted on the Catch 22 of clinics; you won't a;ways see "your" doctor each visit.
The Oncologist has a back-up team of qualified residents who share the assignments, so you never know until clinic day which one you will be seeing. This can be a big obstacle, doubly so if you're not prepared for a substitute and you'll want to think carefully about what you want to accomplish with the doctor of-the-day. This system calls for more flexibility on your part and you may have to adapt your personality to fit theirs to get the best out of the visit and to ensure that you understand one another. Too manipulative you think? You're shedding the no-longer-useful parts of your personality in order to gain this doctor's concentration on you and on your health and welfare. You're not going to change their system, but you have total control over the person they are treating.
Our first clinic visit to the cancer hospital was traumatic for me; Hal never expressed any emotion about it; he behaved matter-of-factly as though this was the next job on the agenda, so let's get on with it. You simply must forget the notion that you walk to the desk and announce you have a two o'clock appointment with your doctor. You might also have an appointment with the haemodialyses lab for the usual blood sample, or you may have an appointment for an ex ray, or a c.a.t. scan. or whatever. You will wait, that you can count on.
It begins the same way: you will check in at the admitting desk, then your file is pulled and sent to whichever clinic area you will be in that day. On Hal's first visit, a volunteer took us off to one side and offered coffee until he was taken in the admissions office to fill out some forms. His photo was taken and stapled to the back of his file, which was a practical way of comparing any changes in his appearance from visit to visit.
Next, the volunteer collected a batch of us newcomers and took us upstairs to the examination clinic. We sat in a crowded holding area and looked carefully around at our companions. Some of them looked skinny, some were in wheelchairs, some women wore those head covers, but by and large, it looked like a normal group. A volunteer called Hal's name and he went around the corner for a weigh-in. She told him his weight in metric, and when we converted it later, could see that his weight was up, probably ten pounds more than he liked.
The holding area is like being with family. You see familiar faces and there is an air of patience; we understand that delay mean one of us is getting special attention because it's needed. One day, you may claim that extra time, and for now you'll try not to begrudge the extra wait.
Eventually it will be your turn and the nurse will direct you to an examining room off the main corridor. Your job is to be thoroughly prepared for your doctor visit. Your trump card is the diary you bring with you, that I will describe in another chapter. It's also your backup system. During our first clinic visits we sometimes went home feeling dissatisfied, and when we analysed the visit over a cup of coffee we realized we hadn't asked the right questions. It's hard to know which question to ask. That's where the diary comes in. We always found that the doctor-of-the-day was unfailingly patient about answering questions and if we had known enough to bring the notebook with us, we would have been so much better prepared. You will have reviewed your questions in the waiting area. Using this method is the best of teamwork and chances are you'll leave satisfied that you've been heard.
continued in chapter 8: part 5
Tuesday, August 14, 2007
chapter 8; part 3
continued from chapter 8: part 2
Hal was aware of the need to stand out from the crowd and his nature was probably like most of the people reading this book. It wasn't in him to deliberately break rules and he was the sort who either waited his turn in line or walked away to find more immediate things to do. He wasn't shy, though, and his personal style was to circle through a room and introduce himself to everyone. He was a casual person and preferred people to use his first name, but his doctors were decidedly uncomfortable with a first- name basis and he never managed to break down this barrier.
His amiable nature earned him respect on the frequent admissions to the general hospital next door.
Now it's your turn. If you're not too sure about how to get your share of attention try returning to successful tricks from your school days. If you weren't the smartest kid in the class, you didn't make the first string on the rugby team and you were not chosen class valedictorian, how come anyone knew your name? What did you do then? Chances are you compensated with your off-the-wall sense of humor, or your striking manner of dressing, or your ability to dream up the best ideas for fund raising for sports uniforms, or your habit of being thoroughly prepared so that people could count on you. Perhaps you were simply a good listener, and I'll bet you knew the names of most of the people in your school. Now, having re-lived the better part of your school days, take the best of these survival techniques and apply them to this new learning experience and make it work. You can go to the head of the class on your second go- around.
Your personality has changed while you've been working at the business of staying alive and making every minute count. By now you might be feeling pretty good about yourself and more confident with this new life style you're developing. You know what kind of person you want to be for the rest of your life, and, think about it, what have you got to lose?
An important way to develop a stand-out personality and be comfortable doing it is by practicing. Chat up the nurses, help pass the tea from the volunteer cart, and if it's your style, try addressing the doctor by his first name; either you will get results or at the least you'll have made some kind of contact. You'll know your practice is paying off when you greet patients you remember from other clinic visits and they show pleasure at being noticed. You can be sure they'll remember you the next time. Feels good, doesn't it, and that's what this is all about, feeling good. You're shaping another positive power you've always had but it's been dormant until now. Your name and face are emerging from the anonymous crowd. You are finding it easier to greet strangers and exchange information. You are taking control and you know that these strangers are your friends and they wish you well.
continued in chapter 8: part 4
Hal was aware of the need to stand out from the crowd and his nature was probably like most of the people reading this book. It wasn't in him to deliberately break rules and he was the sort who either waited his turn in line or walked away to find more immediate things to do. He wasn't shy, though, and his personal style was to circle through a room and introduce himself to everyone. He was a casual person and preferred people to use his first name, but his doctors were decidedly uncomfortable with a first- name basis and he never managed to break down this barrier.
His amiable nature earned him respect on the frequent admissions to the general hospital next door.
Now it's your turn. If you're not too sure about how to get your share of attention try returning to successful tricks from your school days. If you weren't the smartest kid in the class, you didn't make the first string on the rugby team and you were not chosen class valedictorian, how come anyone knew your name? What did you do then? Chances are you compensated with your off-the-wall sense of humor, or your striking manner of dressing, or your ability to dream up the best ideas for fund raising for sports uniforms, or your habit of being thoroughly prepared so that people could count on you. Perhaps you were simply a good listener, and I'll bet you knew the names of most of the people in your school. Now, having re-lived the better part of your school days, take the best of these survival techniques and apply them to this new learning experience and make it work. You can go to the head of the class on your second go- around.
Your personality has changed while you've been working at the business of staying alive and making every minute count. By now you might be feeling pretty good about yourself and more confident with this new life style you're developing. You know what kind of person you want to be for the rest of your life, and, think about it, what have you got to lose?
An important way to develop a stand-out personality and be comfortable doing it is by practicing. Chat up the nurses, help pass the tea from the volunteer cart, and if it's your style, try addressing the doctor by his first name; either you will get results or at the least you'll have made some kind of contact. You'll know your practice is paying off when you greet patients you remember from other clinic visits and they show pleasure at being noticed. You can be sure they'll remember you the next time. Feels good, doesn't it, and that's what this is all about, feeling good. You're shaping another positive power you've always had but it's been dormant until now. Your name and face are emerging from the anonymous crowd. You are finding it easier to greet strangers and exchange information. You are taking control and you know that these strangers are your friends and they wish you well.
continued in chapter 8: part 4
Monday, August 13, 2007
chapter 8: part 2
continued from chapter 8: part 1
Hal made his living as a writer by expressing himself in clear terms. He expected that these skills would be an advantage to establish rapport with the doctor but he hadn't counted on the Catch 22 of clinics; you won't see "your" doctor each visit.
The Oncologist has a back-up team of qualified residents who share the assignments, so you never know until clinic day which one you will be seeing. This can be a big obstacle, doubly so if you're not prepared for a substitute and you'll want to think carefully about what you want to accomplish with the doctor of-the-day. This system calls for more flexibility on your part and you may have to adapt your personality to fit theirs to get the best out of the visit and to ensure that you understand one another. Too manipulative you think? You're shedding the no-longer-useful parts of your personality in order to gain this doctor's concentration on you and on your health and welfare. You're not going to change their system, but you have total control over the person they are treating
The all-time champion of the getting-to-know-you assignment was our friend Michael, a tall temporarily bald man exuding the joy of living. He knew his cancer was the ultimate challenge of his life and he made himself recognized by sheer force of personality; I doubt that anyone in the clinic failed to recognize this man and he had the ability to make everyone smile. He sometimes covered his head with a large red felt hat with sweeping feather and he had an ability to remember names. His enthusiasm even carried over to the treatment he had chosen and the way he planned to tackle it. He didn't mind asking questions that might be construed as naive; he wanted to overcome his cancer and he wanted the best help he could get. He asked questions of every technician, and when he came in for his prescribed treatments he managed through skillful means to surround himself with the people he considered the best in their field, and if he felt that way, his chances of succeeding were going to be improved.
Then there's Claude; a witty, intelligent man. He'd come in for his chemotherapy reeking of marijuana, considered by many to be a helpful relaxant before treatment. He insisted on checking everything that was going to be injected into him, was knowledgeable about the entire process and wasn't shy about saying so. He also used various non- traditional methods to control his cancer and he talked about it to anyone who would listen. He was charming and earnest, opinionated and sometimes abrasive, but oddly likable. His way was slightly bad-boy off- the- wall and it worked for him.
Sarah was a favorite of mine, and there were many women like her. She didn't enter a room, she swept in and took it over. She wasn't particularly pretty, but she was striking. She wore a vivid, shoulder length red wig, with a scarf knotted through as an accent but certainly not to hide it. She favored well tailored suits topped by dramatic capes, and she was unfailingly charming while claiming as much of the spotlight as she could get. No one resented her behavior. She passionately wanted to live and to be noticed and she was succeeding.
Some people achieved recognition by sheer anger;loud, demanding, raising their voices at the slightest provocation. They too are remembered and get attention, if only to get them through the system and out the door. They were using up their precious energy in a negative fashion, and while staff members understand that rage is often a mask for fear, you'll benefit by trying a more positive approach.
Some fellow travellers send letters of appreciation to the doctor and technicians, as well as Christmas cards and gifts. I don't recall anyone getting better marks from the teacher this way, but if you're shy, try it and chances are your name and face will be remembered. Also, it’s nice to be thanked.
continued in chapter 8: part 3
Hal made his living as a writer by expressing himself in clear terms. He expected that these skills would be an advantage to establish rapport with the doctor but he hadn't counted on the Catch 22 of clinics; you won't see "your" doctor each visit.
The Oncologist has a back-up team of qualified residents who share the assignments, so you never know until clinic day which one you will be seeing. This can be a big obstacle, doubly so if you're not prepared for a substitute and you'll want to think carefully about what you want to accomplish with the doctor of-the-day. This system calls for more flexibility on your part and you may have to adapt your personality to fit theirs to get the best out of the visit and to ensure that you understand one another. Too manipulative you think? You're shedding the no-longer-useful parts of your personality in order to gain this doctor's concentration on you and on your health and welfare. You're not going to change their system, but you have total control over the person they are treating
The all-time champion of the getting-to-know-you assignment was our friend Michael, a tall temporarily bald man exuding the joy of living. He knew his cancer was the ultimate challenge of his life and he made himself recognized by sheer force of personality; I doubt that anyone in the clinic failed to recognize this man and he had the ability to make everyone smile. He sometimes covered his head with a large red felt hat with sweeping feather and he had an ability to remember names. His enthusiasm even carried over to the treatment he had chosen and the way he planned to tackle it. He didn't mind asking questions that might be construed as naive; he wanted to overcome his cancer and he wanted the best help he could get. He asked questions of every technician, and when he came in for his prescribed treatments he managed through skillful means to surround himself with the people he considered the best in their field, and if he felt that way, his chances of succeeding were going to be improved.
Then there's Claude; a witty, intelligent man. He'd come in for his chemotherapy reeking of marijuana, considered by many to be a helpful relaxant before treatment. He insisted on checking everything that was going to be injected into him, was knowledgeable about the entire process and wasn't shy about saying so. He also used various non- traditional methods to control his cancer and he talked about it to anyone who would listen. He was charming and earnest, opinionated and sometimes abrasive, but oddly likable. His way was slightly bad-boy off- the- wall and it worked for him.
Sarah was a favorite of mine, and there were many women like her. She didn't enter a room, she swept in and took it over. She wasn't particularly pretty, but she was striking. She wore a vivid, shoulder length red wig, with a scarf knotted through as an accent but certainly not to hide it. She favored well tailored suits topped by dramatic capes, and she was unfailingly charming while claiming as much of the spotlight as she could get. No one resented her behavior. She passionately wanted to live and to be noticed and she was succeeding.
Some people achieved recognition by sheer anger;loud, demanding, raising their voices at the slightest provocation. They too are remembered and get attention, if only to get them through the system and out the door. They were using up their precious energy in a negative fashion, and while staff members understand that rage is often a mask for fear, you'll benefit by trying a more positive approach.
Some fellow travellers send letters of appreciation to the doctor and technicians, as well as Christmas cards and gifts. I don't recall anyone getting better marks from the teacher this way, but if you're shy, try it and chances are your name and face will be remembered. Also, it’s nice to be thanked.
continued in chapter 8: part 3
Friday, August 10, 2007
chapter 8:part 1 CLINIC VISITS
continued from chapter 7: part 4
This is about clinic visits----or---HOW TO GET YOUR NAME IN LIGHTS
The most efficient way to process a huge volume of cancer patients is through the clinic system. If you are living in a smaller area you may be relying on regular visits with the family doctor and perhaps interspersed with occasional clinic visits. The philosophy is the same so read on.
Imagine an unbroken line of men and women slowly winding their way through miles of hospital corridors and at last winding their way back out to the street. This is a metaphoric picture of your life for the next while. When you become part of this human chain you may anxiously wonder, "How will the medical staff ever get to know me? ", which really means, "How do I know I'll get the best care?"
This becomes your next assignment: making yourself known, or, ta- da, getting your name in lights. It's about getting to know the medical staff and for that matter, others around you. Does it really matter whether anyone gets to know you? You bet. What comes to mind when you read about a person " fighting for his life "? Do you have a picture of an unconscious form on a bed surrounded by doctors and machines? Well, here you are, on your feet, and you're fighting hard for your life, doing it one step at a time. I firmly believe, with some medical evidence to back me up, that every positive step you take prolongs your life. That's how you fight for your life. Getting medical people to know you means you're a special face in the crowd, with a name and a personality. If the doctor knows you on sight, chances are you're going to feel more secure about your care. If you’re shy and so is your partner, then make sure you show your best side. Polite, firm about your needs and providing concise factual reports.
This isn't the time for you to slide into passive behavior. I'm not suggesting that you regress into an arrogant demanding monster, but demand your fair share of attention. The payoff is that you'll feel more confident. You are dealing with the clinic medical system on your own terms and you're making it work for you.
continued in chapter 8: part 2
This is about clinic visits----or---HOW TO GET YOUR NAME IN LIGHTS
The most efficient way to process a huge volume of cancer patients is through the clinic system. If you are living in a smaller area you may be relying on regular visits with the family doctor and perhaps interspersed with occasional clinic visits. The philosophy is the same so read on.
Imagine an unbroken line of men and women slowly winding their way through miles of hospital corridors and at last winding their way back out to the street. This is a metaphoric picture of your life for the next while. When you become part of this human chain you may anxiously wonder, "How will the medical staff ever get to know me? ", which really means, "How do I know I'll get the best care?"
This becomes your next assignment: making yourself known, or, ta- da, getting your name in lights. It's about getting to know the medical staff and for that matter, others around you. Does it really matter whether anyone gets to know you? You bet. What comes to mind when you read about a person " fighting for his life "? Do you have a picture of an unconscious form on a bed surrounded by doctors and machines? Well, here you are, on your feet, and you're fighting hard for your life, doing it one step at a time. I firmly believe, with some medical evidence to back me up, that every positive step you take prolongs your life. That's how you fight for your life. Getting medical people to know you means you're a special face in the crowd, with a name and a personality. If the doctor knows you on sight, chances are you're going to feel more secure about your care. If you’re shy and so is your partner, then make sure you show your best side. Polite, firm about your needs and providing concise factual reports.
This isn't the time for you to slide into passive behavior. I'm not suggesting that you regress into an arrogant demanding monster, but demand your fair share of attention. The payoff is that you'll feel more confident. You are dealing with the clinic medical system on your own terms and you're making it work for you.
continued in chapter 8: part 2
Thursday, August 9, 2007
chapter 7: part 4 Who Do You Tell?
continued from Chapter 7: part 3
Once the word was out friends relayed to us any positive information they had about his disease. A lot of our friends are writers and researchers and some automatically set to work investigating, bless them. None of them felt shy about asking for details and I clearly remember one man, renowned for his writing on medical subjects, asking Hal to bring all his medication to the phone to read off the labels to him. Hal basked in the outpouring of affection and caring he was hearing from his peers.
The best thing for us about spreading the word was that many friends made a point of phoning regularly to chat, or meet Hal for regular lunch dates as well as keeping us supplied with anything new they'd learned about the research going on.
On a couple of occasions he was astonished to learn that close business clients also had fought through cancer. One woman told him she'd had a mastectomy three years before followed by radiation treatment and he never knew. Thinking back, he remembered he lost touch with her for a long while and he thought that she had tired of his work and had found other writers. In reality, she had been in treatment and chose to keep her cancer private, and that left him believing he had failed. Another client confided that he had been written off twenty years back with a form of bone cancer and he was doing well, with no trace of the disease.
This is the real benefit of going public. You learn in your own small circle just how many people are on close terms with the disease and are living good lives despite this intrusion. You're suddenly part of an enormous community of positive people who savor every good moment of each day.
It did backfire once. Hal phoned my mother in Vancouver to tell her the news, once he was out of the hospital and feeling good.
She was naturally shocked and tearful.
A few days later she called when we were reading in bed.
I picked up the phone and she was weeping. I did my best to reassure her and told her how well Hal was feeling.
Pause. “Dear, will you be coming back home to live?” As in, when he dies.
She wasn’t fooled, after all her brother had died of liver cancer. Just the same, I wasn’t prepared for a conversation of that sort and I tried to make a joke of it and hung up as quickly as I could.
Hal heard enough to know what she had probably said and he was amused. I was not.
When you are taking treatment you will probably lose weight and look like hell and that's the time you run the risk of bumping into friends who haven't seen you for a while. Sometimes they will give a tight-lipped grimace passing for a smile and choke out, "You look wonderful". The more experienced ones who had either been through cancer or witnessed its stages through relatives or friends were more inclined to look knowledgeable and say, "Ah, you've begun chemo, haven't you?" That's O.K. Chemo can save your life.
The worst experience for us, unexpectedly, came from two members of the medical profession, both friends. This was about the time that Hal was visibly failing. First, a doctor friend came to the house to drop off work- related papers, took one look and visibly flinched. The second time it was a former nurse who dropped by; she wasn’t adept at hiding her shock and she had tears in her eyes.
If you're working on the should- I- or- shouldn't- I- tell conundrum, sort it through this way:
What are you afraid will happen if you tell? Sometimes you will see pity, or sympathy or sorrow or just plain relief it hadn't happened to them. Give your friends a chance; it's important for them to work their feeling through and at least some of them will give you strength and support when you need it most. Besides, you use up too much precious energy trying to remember who knows what.
If you want to maintain your privacy, then pull together a supportive and trustworthy group, so that you can sound off to someone. If you haven't got family or friends around, let go of some of that pride your pride and find a support group. Sharing your feelings can make you well. Swallowing all your fear and frustration can literally kill you.
continued in chapter 8: part 1
Once the word was out friends relayed to us any positive information they had about his disease. A lot of our friends are writers and researchers and some automatically set to work investigating, bless them. None of them felt shy about asking for details and I clearly remember one man, renowned for his writing on medical subjects, asking Hal to bring all his medication to the phone to read off the labels to him. Hal basked in the outpouring of affection and caring he was hearing from his peers.
The best thing for us about spreading the word was that many friends made a point of phoning regularly to chat, or meet Hal for regular lunch dates as well as keeping us supplied with anything new they'd learned about the research going on.
On a couple of occasions he was astonished to learn that close business clients also had fought through cancer. One woman told him she'd had a mastectomy three years before followed by radiation treatment and he never knew. Thinking back, he remembered he lost touch with her for a long while and he thought that she had tired of his work and had found other writers. In reality, she had been in treatment and chose to keep her cancer private, and that left him believing he had failed. Another client confided that he had been written off twenty years back with a form of bone cancer and he was doing well, with no trace of the disease.
This is the real benefit of going public. You learn in your own small circle just how many people are on close terms with the disease and are living good lives despite this intrusion. You're suddenly part of an enormous community of positive people who savor every good moment of each day.
It did backfire once. Hal phoned my mother in Vancouver to tell her the news, once he was out of the hospital and feeling good.
She was naturally shocked and tearful.
A few days later she called when we were reading in bed.
I picked up the phone and she was weeping. I did my best to reassure her and told her how well Hal was feeling.
Pause. “Dear, will you be coming back home to live?” As in, when he dies.
She wasn’t fooled, after all her brother had died of liver cancer. Just the same, I wasn’t prepared for a conversation of that sort and I tried to make a joke of it and hung up as quickly as I could.
Hal heard enough to know what she had probably said and he was amused. I was not.
When you are taking treatment you will probably lose weight and look like hell and that's the time you run the risk of bumping into friends who haven't seen you for a while. Sometimes they will give a tight-lipped grimace passing for a smile and choke out, "You look wonderful". The more experienced ones who had either been through cancer or witnessed its stages through relatives or friends were more inclined to look knowledgeable and say, "Ah, you've begun chemo, haven't you?" That's O.K. Chemo can save your life.
The worst experience for us, unexpectedly, came from two members of the medical profession, both friends. This was about the time that Hal was visibly failing. First, a doctor friend came to the house to drop off work- related papers, took one look and visibly flinched. The second time it was a former nurse who dropped by; she wasn’t adept at hiding her shock and she had tears in her eyes.
If you're working on the should- I- or- shouldn't- I- tell conundrum, sort it through this way:
What are you afraid will happen if you tell? Sometimes you will see pity, or sympathy or sorrow or just plain relief it hadn't happened to them. Give your friends a chance; it's important for them to work their feeling through and at least some of them will give you strength and support when you need it most. Besides, you use up too much precious energy trying to remember who knows what.
If you want to maintain your privacy, then pull together a supportive and trustworthy group, so that you can sound off to someone. If you haven't got family or friends around, let go of some of that pride your pride and find a support group. Sharing your feelings can make you well. Swallowing all your fear and frustration can literally kill you.
continued in chapter 8: part 1
Wednesday, August 8, 2007
chapter 7: part 3 Who to Tell?
continued from chapter 7: part 2
Some of the people in our support groups were such private people they found it tough even to be there, but came either because of the bitter loneliness they were suffering or their mates demanded it. For this small group the thought of going public would have caused even more emotional suffering.
Fiona found it tough when at first her husband Sean refused to let anyone know but the children because, "I don't want their pity." She is a gregarious person who finds strength in sharing the hard times with close friends but she was faithful to her promise. In time, he got over the first shock and opened up by first telling his brothers and much later he grudgingly agreed to tell his business clients. This risk-taking opened up a wealth of love particularly from his brothers. They showed their feelings and came closer together.
Rachael and Eric never considered secrecy. His company was understanding and encouraging and their friends were shocked but supportive. He was an athletic, energetic man and overcompensated by rushing back to his regular tennis games and later renovating the bathroom. there is this prevailing feeling,"If I can do all these things, then I can't be sick, can I?"
At first, getting used to hospitals and doctors and the news that your life is no longer yours alone is enough to handle. If you think back to your feelings when you learned a friends or acquaintance had cancer, you pretty well wrote that person off, and you have to face that some friends will write you off.
If you choose to talk about your cancer, you will risk people shunning you because they don't know how to treat you and wondering how you'll fit into dinner parties. I mean, are you going to ask for special foods at the last minute or worse still, not eat a thing while your hair drops onto your plate and will you talk cancer all through the meal? Will you sit there like a cadaver? Ah, all the unknowns.
Berry said that friends she believed would be close and understanding couldn't come to see Ronald while he was recuperating explaining, "I wouldn't know what to talk to him about." That's the cue for the partner to ease this passage; be prepared to sit in on visits until they struggle to recapture their old relaxed ways.
Along with personal feelings, there will be general upsets from the outside world.
We had put some money aside to enlarge my study on the third floor and had arranged with a contractor that his architect would draw up the rough plans and also steer the details through the city hall committee of adjustment, for one thousand dollars.
After the operation, I phoned the contractor to tell him that we would have to put a halt to the plans and gave a brief explanation. He ignored my explanation and said the plans were done and I said fine, we'll pay for them.
The very next day he sent a lackey over to the house to deliver the plans and the man, with great embarrassment, asked for the full fee, immediately. Obviously they didn't want to lose out if Hal died.
They didn't fulfil the steps outlined to earn the fee and the plans were a simple outline of what was to be done without any specific details. He deserved some money but not the entire amount. I remember being angry at the moment, but I was so deeply stressed with worry about Hal I wrote the cheque.
continued in chapter 7: part 4
Some of the people in our support groups were such private people they found it tough even to be there, but came either because of the bitter loneliness they were suffering or their mates demanded it. For this small group the thought of going public would have caused even more emotional suffering.
Fiona found it tough when at first her husband Sean refused to let anyone know but the children because, "I don't want their pity." She is a gregarious person who finds strength in sharing the hard times with close friends but she was faithful to her promise. In time, he got over the first shock and opened up by first telling his brothers and much later he grudgingly agreed to tell his business clients. This risk-taking opened up a wealth of love particularly from his brothers. They showed their feelings and came closer together.
Rachael and Eric never considered secrecy. His company was understanding and encouraging and their friends were shocked but supportive. He was an athletic, energetic man and overcompensated by rushing back to his regular tennis games and later renovating the bathroom. there is this prevailing feeling,"If I can do all these things, then I can't be sick, can I?"
At first, getting used to hospitals and doctors and the news that your life is no longer yours alone is enough to handle. If you think back to your feelings when you learned a friends or acquaintance had cancer, you pretty well wrote that person off, and you have to face that some friends will write you off.
If you choose to talk about your cancer, you will risk people shunning you because they don't know how to treat you and wondering how you'll fit into dinner parties. I mean, are you going to ask for special foods at the last minute or worse still, not eat a thing while your hair drops onto your plate and will you talk cancer all through the meal? Will you sit there like a cadaver? Ah, all the unknowns.
Berry said that friends she believed would be close and understanding couldn't come to see Ronald while he was recuperating explaining, "I wouldn't know what to talk to him about." That's the cue for the partner to ease this passage; be prepared to sit in on visits until they struggle to recapture their old relaxed ways.
Along with personal feelings, there will be general upsets from the outside world.
We had put some money aside to enlarge my study on the third floor and had arranged with a contractor that his architect would draw up the rough plans and also steer the details through the city hall committee of adjustment, for one thousand dollars.
After the operation, I phoned the contractor to tell him that we would have to put a halt to the plans and gave a brief explanation. He ignored my explanation and said the plans were done and I said fine, we'll pay for them.
The very next day he sent a lackey over to the house to deliver the plans and the man, with great embarrassment, asked for the full fee, immediately. Obviously they didn't want to lose out if Hal died.
They didn't fulfil the steps outlined to earn the fee and the plans were a simple outline of what was to be done without any specific details. He deserved some money but not the entire amount. I remember being angry at the moment, but I was so deeply stressed with worry about Hal I wrote the cheque.
continued in chapter 7: part 4
Tuesday, August 7, 2007
chapter 7: part 2
Continued from Chapter 7: part 1
We kept silent about Hal's cancer until one of his first mornings home from the hospital when he went out on the porch to meet the mailman and he said, I swear,
"Good morning, I'm just out of the hospital and I have cancer." He continued on cheerfully about what type of cancer and how he felt good and planned to continue to feel that way. The mailman, to his credit, responded well.
I sank onto the hall stairs, opening and closing my mouth like a beached fish, silently working on what I'd just heard while he sorted through the mail.
Before I could even question him about being so public, the phone rang and he rushed past me and up the stairs to take a business call and I heard him tell his client exactly what had happened and that he was mending very well indeed.
I remained on the stairs and thought about this for a moment. Okay Hal, it's your life and your career and if you want to be the totally up front person you've always been, then that's the way it will be. You may lose some clients but we'll take this a step at a time. Now I'd better tidy up the subterfuge.
I called the children to say the vow of secrecy was over and then called our friends to say that I'd been less than honest with them up to this point. That was tough. Some of them didn't know what to say and just spluttered, and others cried. Cancer certainly does not have a good reputation.
I felt a burden lifted from me and because so many of our friends are writers, and writers are naturally open and curious, they asked all sorts of questions and I felt even better speaking about the disease and the surgery as though it was just another occurrence in our lives. Life was still going on.
Hal's truthful attitude lost him the two new clients left stranded when he was in hospital but the remainder stayed with him. Even during the months ahead when he was in and out of hospital, some of them called regularly to say that when he was ready there would be work for him. This did wonders for his morale and I'll never forget their kindness in taking the time to make him feel a part of the living. Their attitudes set the tone and despite the problems that cropped up later, he never missed a deadline.
He continued to discuss his illness in a matter-of-fact way, never dwelling on it, just enough to say this is what has happened and I'm dealing with it very well, thank you.
My friend Berry had the experience I expected to have. Ronald imposed complete silence about his cancer, claiming people would feel sorry for him and the people at the office would never understand. Berry found it extremely difficult having to be cautious about what she said and she wasn't used to lying to friends, or anyone else. Eventually, as Ronald got more used to the fact that he did have cancer and he was dealing with it, he casually lifted the ban in an offhand way. He said to Berry, "Well, I guess it's okay if you tell the family, but that's all." Berry took a deep breath, stiffened all five foot one of her and said to her over six-feet spouse, "Ronald, this is a warning and an ultimatum. I will never, never lie for you again." And she never did.
continued in chapter 7: part 3
We kept silent about Hal's cancer until one of his first mornings home from the hospital when he went out on the porch to meet the mailman and he said, I swear,
"Good morning, I'm just out of the hospital and I have cancer." He continued on cheerfully about what type of cancer and how he felt good and planned to continue to feel that way. The mailman, to his credit, responded well.
I sank onto the hall stairs, opening and closing my mouth like a beached fish, silently working on what I'd just heard while he sorted through the mail.
Before I could even question him about being so public, the phone rang and he rushed past me and up the stairs to take a business call and I heard him tell his client exactly what had happened and that he was mending very well indeed.
I remained on the stairs and thought about this for a moment. Okay Hal, it's your life and your career and if you want to be the totally up front person you've always been, then that's the way it will be. You may lose some clients but we'll take this a step at a time. Now I'd better tidy up the subterfuge.
I called the children to say the vow of secrecy was over and then called our friends to say that I'd been less than honest with them up to this point. That was tough. Some of them didn't know what to say and just spluttered, and others cried. Cancer certainly does not have a good reputation.
I felt a burden lifted from me and because so many of our friends are writers, and writers are naturally open and curious, they asked all sorts of questions and I felt even better speaking about the disease and the surgery as though it was just another occurrence in our lives. Life was still going on.
Hal's truthful attitude lost him the two new clients left stranded when he was in hospital but the remainder stayed with him. Even during the months ahead when he was in and out of hospital, some of them called regularly to say that when he was ready there would be work for him. This did wonders for his morale and I'll never forget their kindness in taking the time to make him feel a part of the living. Their attitudes set the tone and despite the problems that cropped up later, he never missed a deadline.
He continued to discuss his illness in a matter-of-fact way, never dwelling on it, just enough to say this is what has happened and I'm dealing with it very well, thank you.
My friend Berry had the experience I expected to have. Ronald imposed complete silence about his cancer, claiming people would feel sorry for him and the people at the office would never understand. Berry found it extremely difficult having to be cautious about what she said and she wasn't used to lying to friends, or anyone else. Eventually, as Ronald got more used to the fact that he did have cancer and he was dealing with it, he casually lifted the ban in an offhand way. He said to Berry, "Well, I guess it's okay if you tell the family, but that's all." Berry took a deep breath, stiffened all five foot one of her and said to her over six-feet spouse, "Ronald, this is a warning and an ultimatum. I will never, never lie for you again." And she never did.
continued in chapter 7: part 3
Monday, August 6, 2007
chapter 7: part 1 Who do You Tell?
continued from chapter 6 part 8
Remember those movies when the spunky heroine kept her terminal illness to herself and tidily set about winding down her life without inconveniencing anyone? Real life is much messier. Did our heroine ever scream about the injustice of it all? Did she ever confide in anyone? Apparently a gentle cough was okay but an anorexic appearance would have been definitely uncool.
How do you feel about telling people you have cancer? What do you think they'll do? Shun you like lepers in the old days? Avoid you because they don't know what to say? Afraid you'll read pity in their eyes?
After Hal's operation, I was certain in my mind that we had to keep the news strictly within the family. There were a lot of what-if's buzzing inside my head and this seemed such a clear decision, so much so that I didn't even consider discussing it with anyone, including Hal. I simply asked the children to keep silent.
We told people his surgery was to correct a bowel obstruction.
I believed this was what Hal wanted and I made the decision while he was still groggy from the anaesthetic.
The big question was how would his clients react to the news. He loved his work and had said many times over the years that he couldn't imagine life without it. If that was the way he felt then I'd lie for him forever so that he could keep working, if he felt well enough to work. There was a time I talked idly of us settling in a retirement cottage somewhere warm and he'd emphatically snort that he had no interest in rusting out; he would continue writing as long as he could fasten his fingers to the computer keys. No retirement in Florida for this man.
I never thought of us as private people and there was little that we considered out of bounds but in this case I had to find a way to lie convincingly. Friends who knew he was in hospital believed, as we had, that he probably had Crohn's disease. After the surgery, when they called to ask how it went, the children and I answered vaguely that the blockage was removed and Hal would be out of hospital in a week or so.
It was perfectly clear in my mind that this was the correct way to handle the situation, so much so that it never occurred to me to ask for an update from the subject of all this attention, Hal.
continued in chapter 7: part 2
Remember those movies when the spunky heroine kept her terminal illness to herself and tidily set about winding down her life without inconveniencing anyone? Real life is much messier. Did our heroine ever scream about the injustice of it all? Did she ever confide in anyone? Apparently a gentle cough was okay but an anorexic appearance would have been definitely uncool.
How do you feel about telling people you have cancer? What do you think they'll do? Shun you like lepers in the old days? Avoid you because they don't know what to say? Afraid you'll read pity in their eyes?
After Hal's operation, I was certain in my mind that we had to keep the news strictly within the family. There were a lot of what-if's buzzing inside my head and this seemed such a clear decision, so much so that I didn't even consider discussing it with anyone, including Hal. I simply asked the children to keep silent.
We told people his surgery was to correct a bowel obstruction.
I believed this was what Hal wanted and I made the decision while he was still groggy from the anaesthetic.
The big question was how would his clients react to the news. He loved his work and had said many times over the years that he couldn't imagine life without it. If that was the way he felt then I'd lie for him forever so that he could keep working, if he felt well enough to work. There was a time I talked idly of us settling in a retirement cottage somewhere warm and he'd emphatically snort that he had no interest in rusting out; he would continue writing as long as he could fasten his fingers to the computer keys. No retirement in Florida for this man.
I never thought of us as private people and there was little that we considered out of bounds but in this case I had to find a way to lie convincingly. Friends who knew he was in hospital believed, as we had, that he probably had Crohn's disease. After the surgery, when they called to ask how it went, the children and I answered vaguely that the blockage was removed and Hal would be out of hospital in a week or so.
It was perfectly clear in my mind that this was the correct way to handle the situation, so much so that it never occurred to me to ask for an update from the subject of all this attention, Hal.
continued in chapter 7: part 2
Friday, August 3, 2007
chapter 6: part 8 Study your doctor
Continued from Chapter 6: part 7
We settled in quickly to the clinic routine and always came prepared.
An expression occasionally used by the doctor stuck with me, “When you get sicker.” That was the key phrase. When you get sicker.
On our first visit we rattled off our list of rehearsed questions and mentioned the test drug Hal had been offered. The doctor knew of it, of course. He was a factual and honest as he could be and he left us with the impression that when there is a break-through, he will be quick to act on it for his patients. I was reminded that the surgeon said to think of the Oncologist as a researcher above all, and when a breakthrough came, he would be only too happy to be involved.
Information and accessibility were important to us and we got that. We naively asked if the treatment he was considering for Hal showed that patients had ever gone into remission for five years or more. I don’t recall how he fielded that one but we didn’t get a definitive answer.
I again wondered out loud about Hal’s life expectancy when Hal interrupted, “Look, I will not permit anyone to tell me when I might die.”
Here was a change of direction. We had endlessly discussion the question of Hal’s life expectancy, but now Hal had made his stand. The matter was never discussed again and I know that would have been marked in his file.
We liked and trusted the oncologist from the start. We didn’t ask how long the planned treatment would be or whether there were other procedures that might be tried, but we didn’t doubt that hr would answer direct questions honestly and compassionately as Hal’s illness progressed. We left Hal’s life in his hands and we believed completely that he would do what he considered the best way to benefit Hal.
We did ask about a self -help group run by a Princess Margaret staff psychologist. The doctor sent along our names and the clinic got in touch with us.
That day, based on the man’s manner and professional approach, we made the decision to commit to this doctor and this hospital. We never seriously discussed the trial drug again and turned out concentration and attention to “reading” this most important person in our lives.
During all our visits over the months he never ever left the room until he was satisfied all our questions had been answered, and we never felt any impatience on his part, knowing there were other patients waiting for him. Hal liked and trusted him.
I can’t imagine how an Oncologist or anyone working where the mortality rate is so high, can lead a balanced life. Certainly, keeping patients at arms length is a start and concentration on the research is vital.
You won’t find a doctor who isn’t terribly busy, so forget that dream. We were heard and our questions were answered. The doctor gave us his office number and the name of his secretary and god bless doctor’s secretaries. They are a compassionate bunch.
This man had a limited humor, not unexpected, was all business, gave us his complete attention and was knowledgeable. To be sure, he would never have picked Hal out of a crowd, but we had found our doctor.
Now to begin.
continued in chapter 7: part 1
We settled in quickly to the clinic routine and always came prepared.
An expression occasionally used by the doctor stuck with me, “When you get sicker.” That was the key phrase. When you get sicker.
On our first visit we rattled off our list of rehearsed questions and mentioned the test drug Hal had been offered. The doctor knew of it, of course. He was a factual and honest as he could be and he left us with the impression that when there is a break-through, he will be quick to act on it for his patients. I was reminded that the surgeon said to think of the Oncologist as a researcher above all, and when a breakthrough came, he would be only too happy to be involved.
Information and accessibility were important to us and we got that. We naively asked if the treatment he was considering for Hal showed that patients had ever gone into remission for five years or more. I don’t recall how he fielded that one but we didn’t get a definitive answer.
I again wondered out loud about Hal’s life expectancy when Hal interrupted, “Look, I will not permit anyone to tell me when I might die.”
Here was a change of direction. We had endlessly discussion the question of Hal’s life expectancy, but now Hal had made his stand. The matter was never discussed again and I know that would have been marked in his file.
We liked and trusted the oncologist from the start. We didn’t ask how long the planned treatment would be or whether there were other procedures that might be tried, but we didn’t doubt that hr would answer direct questions honestly and compassionately as Hal’s illness progressed. We left Hal’s life in his hands and we believed completely that he would do what he considered the best way to benefit Hal.
We did ask about a self -help group run by a Princess Margaret staff psychologist. The doctor sent along our names and the clinic got in touch with us.
That day, based on the man’s manner and professional approach, we made the decision to commit to this doctor and this hospital. We never seriously discussed the trial drug again and turned out concentration and attention to “reading” this most important person in our lives.
During all our visits over the months he never ever left the room until he was satisfied all our questions had been answered, and we never felt any impatience on his part, knowing there were other patients waiting for him. Hal liked and trusted him.
I can’t imagine how an Oncologist or anyone working where the mortality rate is so high, can lead a balanced life. Certainly, keeping patients at arms length is a start and concentration on the research is vital.
You won’t find a doctor who isn’t terribly busy, so forget that dream. We were heard and our questions were answered. The doctor gave us his office number and the name of his secretary and god bless doctor’s secretaries. They are a compassionate bunch.
This man had a limited humor, not unexpected, was all business, gave us his complete attention and was knowledgeable. To be sure, he would never have picked Hal out of a crowd, but we had found our doctor.
Now to begin.
continued in chapter 7: part 1
Thursday, August 2, 2007
Chapter 6: part 7 Study Your Doctor
continued from chapter 6: part 6
At last Doctor Roberts announced he was going to set up an appointment with the Oncologist at the Princess Margaret Hospital next door. Now we wouldn’t have been dumb enough to maintain ties with this man, but ask yourself whether a person like this would waste his time trying to prolong Hal’s life. I think not.
Three months to the day since his surgery Hal had his first meeting with Doctor five, the Oncologist. This was also our first experience with clinic visits, an experience like no other.
Kind volunteers ushered us through the first-time admitting routine until Hal was weighed and we were directed to an examining room. I had every intention of being with Hal and that turned out to be acceptable procedure anyway. The room was a decent size, with examining table, washroom, cupboards and sink. Hal stripped down to his underwear and socks and pulled himself onto the table. I sat in a chair holding his clothes, magazines, books and other necessities. We probably only waited fifteen minutes, and a nurse popped in once to say the doctor would be in soon.
We watched the shadows of passing feet under the crack in the door leading to the more private back corridor. Another nurse dropped in for a moment to let us know what the procedure would be and then a resident entered to do the usual testing and thumping and asking of questions and as always, in Hal’s case, came the rectal exam. I know he was sore from them but he never complained.
Finally, Doctor Edge arrived, accompanied by the resident and a nurse. My hands were ice cold. Here was the person who might be able to give us more of that quality time we kept reading about.
He was a stocky bearded man, crisp, articulate and smiling. He had the kind of erect body that appeared rooted to the floor. He introduced himself and was definitely not a person you would be on a first-name basis with. It became immediately clear that he had read Hal’s file thoroughly. He knew we were studying him as carefully as he was studying Hal. He talked about Hal’s kind of cancer and what he perceived as Hal’s condition at the present time. Hal said he felt well, had returned to work full time and found it hard to believe he had cancer.
The doctor told us he didn’t plan to begin any treatment while Hal was feeling well and while his weight was holding. We asked about something another doctor had mentioned, that they might consider surgically implanting an infusion pump near Hal’s liver, to mete out chemo drugs but Doctor Edge didn’t think this was the right course. He said that when the time came for treatment he would probably try chemotherapy by injection, a series lasting one week and then a follow-up six weeks later. We did ask how the doctor would know when to begin treatment and he said when Hal began to lose weight and complained of various discomforts.
continued in chapter 6: part 8
At last Doctor Roberts announced he was going to set up an appointment with the Oncologist at the Princess Margaret Hospital next door. Now we wouldn’t have been dumb enough to maintain ties with this man, but ask yourself whether a person like this would waste his time trying to prolong Hal’s life. I think not.
Three months to the day since his surgery Hal had his first meeting with Doctor five, the Oncologist. This was also our first experience with clinic visits, an experience like no other.
Kind volunteers ushered us through the first-time admitting routine until Hal was weighed and we were directed to an examining room. I had every intention of being with Hal and that turned out to be acceptable procedure anyway. The room was a decent size, with examining table, washroom, cupboards and sink. Hal stripped down to his underwear and socks and pulled himself onto the table. I sat in a chair holding his clothes, magazines, books and other necessities. We probably only waited fifteen minutes, and a nurse popped in once to say the doctor would be in soon.
We watched the shadows of passing feet under the crack in the door leading to the more private back corridor. Another nurse dropped in for a moment to let us know what the procedure would be and then a resident entered to do the usual testing and thumping and asking of questions and as always, in Hal’s case, came the rectal exam. I know he was sore from them but he never complained.
Finally, Doctor Edge arrived, accompanied by the resident and a nurse. My hands were ice cold. Here was the person who might be able to give us more of that quality time we kept reading about.
He was a stocky bearded man, crisp, articulate and smiling. He had the kind of erect body that appeared rooted to the floor. He introduced himself and was definitely not a person you would be on a first-name basis with. It became immediately clear that he had read Hal’s file thoroughly. He knew we were studying him as carefully as he was studying Hal. He talked about Hal’s kind of cancer and what he perceived as Hal’s condition at the present time. Hal said he felt well, had returned to work full time and found it hard to believe he had cancer.
The doctor told us he didn’t plan to begin any treatment while Hal was feeling well and while his weight was holding. We asked about something another doctor had mentioned, that they might consider surgically implanting an infusion pump near Hal’s liver, to mete out chemo drugs but Doctor Edge didn’t think this was the right course. He said that when the time came for treatment he would probably try chemotherapy by injection, a series lasting one week and then a follow-up six weeks later. We did ask how the doctor would know when to begin treatment and he said when Hal began to lose weight and complained of various discomforts.
continued in chapter 6: part 8
Wednesday, August 1, 2007
Chapter 6: part 6 Study Your Doctor
continued from chapter 6: part 5
I realize now that Doctor Roberts was just marking time until we could see the oncologist but at the time he seemed as puzzled as we were about what should be done next. All he had to do was keep monitoring until the forthcoming appointment at Princess Margaret Hospital.
He got it in his head at our next meeting that he didn’t have enough information about the placement of the liver spots, although the surgeon’s letter to him, which he read out loud to us, seemed clear enough.
We were like lambs led to the slaughter. He ordered a venogram, a procedure to be
done in the Emergency Department on an outpatient basis. Dye is inserted in a groin artery and when the dye reaches the liver, it is Ex-Rayed.
On the day, Hal was given a tranquillizer and I sat across the hall from the procedures room, where he was taken.
Once, the door was opened, and I saw him lying on the table covered by a blood-soaked sheet. Arteries tend to gush. He was still woozy but cheerful when he was wheeled out on the stretcher. He was instructed to lie still for a couple of hours to be sure the bleeding wouldn’t resume again. The doctor came in and brought the plates with him and we looked at the tumors. They looked like bull eyes. So, now he agreed with the man who had seen the tumors first hand; the tumors were indeed too spread out to be successfully removed. And it was really necessary to put Hal through this exercise to give this temporary doctor his first-hand view?
Ironically, when Hal finally moved on to the next doctor, this Ex-Ray was lost.
continued in chapter 6: part 7
I realize now that Doctor Roberts was just marking time until we could see the oncologist but at the time he seemed as puzzled as we were about what should be done next. All he had to do was keep monitoring until the forthcoming appointment at Princess Margaret Hospital.
He got it in his head at our next meeting that he didn’t have enough information about the placement of the liver spots, although the surgeon’s letter to him, which he read out loud to us, seemed clear enough.
We were like lambs led to the slaughter. He ordered a venogram, a procedure to be
done in the Emergency Department on an outpatient basis. Dye is inserted in a groin artery and when the dye reaches the liver, it is Ex-Rayed.
On the day, Hal was given a tranquillizer and I sat across the hall from the procedures room, where he was taken.
Once, the door was opened, and I saw him lying on the table covered by a blood-soaked sheet. Arteries tend to gush. He was still woozy but cheerful when he was wheeled out on the stretcher. He was instructed to lie still for a couple of hours to be sure the bleeding wouldn’t resume again. The doctor came in and brought the plates with him and we looked at the tumors. They looked like bull eyes. So, now he agreed with the man who had seen the tumors first hand; the tumors were indeed too spread out to be successfully removed. And it was really necessary to put Hal through this exercise to give this temporary doctor his first-hand view?
Ironically, when Hal finally moved on to the next doctor, this Ex-Ray was lost.
continued in chapter 6: part 7
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