Maintaining Hope Through the Cancer Journey

2014
MacDonald, Ian

As you can see, I am wearing my yellow T-shirt. This is the Survivors' Shirt from The Relay for Life of the Canadian Cancer Society. The recent shirts have the words "Celebrate, Remember, and Fight Back." I certainly support these sentiments but this one from past years has one word on the front HOPE. Hope in cancer is what I wish to talk about today.

What is Hope? I am sure that there are many different definitions, relating to specific circumstances. I think that we could just say that it is a belief that something good will happen. That is definitely not an easy situation in cancer.

My topic is titled "Maintaining Hope through the Cancer Journey". However, my comments should really be titled "Doctor Please do not Destroy Your Patients' Hope", as they go through their cancer journey.

As physicians our goal is to provide the best possible care for our patients and to do no harm. One of the most crucial roles in cancer care is maintaining hope. One of the most difficult elements of cancer care is maintaining hope. This requires our persistence, consistency and our time.

It takes no time at all to destroy hope. We can do it as we give the diagnosis of cancer, or at any patient encounter. At the time of diagnosis, patients and families are obviously frightened and very vulnerable. Inappropriate comments can destroy hope before they even have a chance to begin their fight. We still hear people say that one of the most difficult parts of their whole cancer experience was how they were first given their diagnosis. The "Breaking of Bad News" is a whole subject into itself. I could easily go off on that tangent, but I will not do so now. That is a separate talk of its own. When giving the diagnosis of cancer we cannot turn bad news into good news, but we can offer empathy, support, a plan for their management, and offer some hope for a person's future.

Cancer is a sneaky disease. Cancer is one of the most feared words in medicine - to patients, to their families, and even to physicians. One day a person is fine, believing that they are well and healthy. The next day they are told that they have cancer. Life is never the same again. One's life is threatened. The comfort and security of one's family is also threatened. The thought of cancer never leaves your mind. For me, after being diagnosed with cancer I wondered what I ever thought about before. Suddenly it was nothing but cancer. So how do people cope with this situation? How do they remain positive, or have any hope for their future? Maintaining hope is as vital to patients as is the air that we breathe.

I want to share with you some comments given to me directly from cancer patients. These statements are from people that I have been in direct contact with through Cancer Connection. I will then relate some of my own early cancer experiences. Finally I will come back to these patients as they comment on their Doctor-Patient relationships, with the unfortunate loss of hope that they experienced from their doctors.

Here are a few patient statements relating to how cancer impacted on their lives:

Glenda: The medical system is so slow, waiting for the tests and then waiting for the results. Your mind runs many miles. You live from CT Scan to CT Scan. The journey is like a rollercoaster ride, and I think about cancer all the time.

Patty: The situation is like a volcano that erupts and we are helpless. I never felt vulnerable and insecure before. I am very frustrated by the indecisions and the different opinions from different doctors.

Philip: The course is like being swept along by a strong current towards a waterfall. One tries to paddle back upstream, but you continue to be swept along towards the abyss. The whole family is involved. All in the same boat, all swept along together.

You will agree that these are very powerful statements. They come from strong individuals who were overwhelmed by their cancer.

I was one of those cancer patients. Like nearly everyone else who has had a cancer, we all live with the after effects of cancer on a daily basis for the rest of our lives. On the other hand, I also realize everyday how very fortunate I have been. To be a survivor I feel that I am the most fortunate person here. It is a blessing for me just to be in this room with all of you.

I will give you a bit of our cancer story, as an example of what your patients are experiencing as they try to deal with this awful disease. I said our story, as cancer is a family disease. My wife, Jane, was affected just as much as I was. In many ways the spouse and the family are affected just as much, and sometimes even more than the patient, albeit in different ways. I will give you my story as an example of the strange and various thoughts that go through the mind of a cancer patient, so that you will be aware what your patients may be thinking.

I never ever thought that I would develop cancer. Cancer was nowhere on my radar screen. I had been well, and was active in sports. I was not a smoker. I had no family history of cancer. I did not have one sick day in 21 years of medical practice. I was a doctor. I was not a patient. Even more so I believed that my body would not let me down like that. I thought I was too healthy to have cancer. Cancer only happens to other people. How wrong could I be. 20 years ago, in November 1993 my life changed. I was diagnosed with one of the worst cancers - Pancreatic Cancer.

If one has tea-colored urine, due to the presence of bile, the color does not clear with forced fluids. I know. I tried it. That was my first sign that something was wrong. When this persisted for several days I looked more closely at my skin and my eyes. True enough my sclera were turning yellow. Being a smart doctor I thought it was time for some blood tests. Monday morning I went to CIU with my requisition in hand. Once my bloods were taken, I did my hospital rounds and then went off to the office as usual. By noontime I was curious so I called the lab and got my results. Sure enough, the bilirubin was elevated as well as all the liver enzymes. Something was not right. I had a problem. It was time to get a real doctor involved, enough of my own self-doctoring. My good friend and gastroenterologist was the obvious choice, Dr Bud MacSween.

I showed him my numbers and asked him what he thought of them. He did not answer, but asked "whose results are these"? When I told him that they were mine, I don't think that he believed me. Then he looked at me, back to the numbers and just said “Come back to my office at the end of the day". He quizzed me and examined me but other than the jaundice  there was not much else to find. No pain, no tenderness. Generally I felt well. I had played tennis just the past week and had just closed up our camp on the weekend. There were no other warning symptoms of what was going on inside me.

Bud had arranged for an Ultrasound for the next day, hoping for an obstructing gallstone, but remember I did have painless jaundice. When the technician called in the Radiologist, and they mumbled quietly in the corner I became concerned that all was not right. When they then sent me down the hall for a stat CT Scan it was clear that the plot had thickened.

The CT scan was clearly abnormal. There was an obstructing mass in the head of the pancreas. This Radiologist asked me if I wanted to look at the pictures. You don't want to appear disinterested, but by now I was truly in a tailspin. It was impossible to focus on the images. Everything was a blur. It was unreal to believe that this pancreatic mass he was describing, was mine.

There was a bit of a wait before seeing Bud so I had to get out of there. I needed some fresh air and a walk around the hospital, hoping that I would not bump into someone in the hallways who might casually ask "How are you doing today?”  When Dr MacSween told me of the pancreatic cancer I think that it was just as hard on him as it was for me.

However, for me the worst was yet to come. I had to tell Jane. When she came to pick me up it was a very quiet drive home. Not much was said in the car. That was not a good time to start a CA talk. Once home, the truth had to be told. The CT just showed a mass, so cancer wasn't really said. It takes time to say the Cancer word. We had not gotten that far yet. That takes more time. There were hugs and tears as we tried to grasp the meaning of our new situation, and figure out where we were going.

The number one emotion for me was guilt. Jane had pain, fears and insecurity all because of me. Maybe it was not really my fault but I felt responsible. There still is the old fashioned idea that you have a cancer because of something that you did wrong, something you did that caused it. I was supposed to be the man in the family, the strong man, the breadwinner. Now I was the weak link in the chain. Cancer is a family disease. It affects everyone. I had caused this tsunami to my family.

So there we were. I had had blood tests, an Ultrasound, a CT Scan, and had been seen by the specialist. Something was missing from this list. Someone was missing. Where was the Family Doctor? Guess who did not have a Family Doctor? The Family Doctor himself, the one who had taken good health for granted and never considered that some day he might need medical care himself. We all know that it is never easy to get a family doctor. Perhaps being in the system might make it easier. But a new FD might be hesitant to accept me, realizing that he would have to deal with a colleague with pancreatic cancer. This was likely to be a difficult course for both of us. I did not want to do that to someone in my own call group. Also, that would not be a good thing to do in case I was sick on a night when I was on call myself. I would be my own doctor again, and I had just decided that I should stop doing that. I did find a family doctor and we have been putting up with each other over these 20 years.

I needed treatment. We were hoping for surgery. As you all know, surgery is the only hope for a cure in pancreatic cancer. At that time, nobody in New Brunswick was doing elective Whipple's Procedures, or radical pancreatic-biliary surgery.  Bud and the local surgeons knew a Dr Bryce Taylor in Toronto who had expertise in pancreatic disease so we were off to Toronto the next weekend. Jane had just heard in a CBC interview of someone who had actually survived pancreatic cancer. If someone else had done it, I was going to survive too. That was my goal.

We arrived in Toronto on Sunday believing that I was booked for surgery, only to find that nothing was booked at all. Dr Taylor probably had received a number of referrals for surgery, which on further assessment were not really surgical candidates. He relied on a Dr Wilson to do more ultrasound scans before actually booking the OR. The next day I was on the ultrasound table as she scanned up and down, then back and forth for quite a long time. It seemed forever to me. That was the first time that I really felt like the vulnerable and insecure patient. Dr Wilson would give a report to Dr Taylor. Based on that I would either have surgery, or just be sent home for palliative care. It was an anxious time as I realized that I had no control over my future. The mass was prominent and did extend up along the portal vein, but surgery was still considered a possibility. He had no OR time till the end of the week but did not want me to be a Friday add on case. He gave us several options. We could stay and wait for some OR time, or just go home, get our affairs in order and come back in the new year. We had not come all this distance for just another ultrasound. We would stay and wait for some OR time.

We had almost a week in Toronto. It was a surreal experience. It was less than a month before Christmas. Yonge Street was busy with all the happy and excited shoppers. The famous Santa Claus Parade went by, with me wishing I could be in the pipe band, but just watching from the sidelines. Life continued in the fast lane for everyone else but our lives were on hold. I almost felt that there was this CA label on my forehead, but no one saw it. Nobody paid any attention to us. Nobody cared about us at all. Life was unchanged for everyone else, but our lives were totally altered as the thought of Cancer never left our minds. I was getting more jaundiced each day as we just waited. I am sure that every cancer patient finds it difficult to watch the world continue as before, when their life has changed dramatically. Intellectually we realize that life should go on as before, but emotionally it is difficult to accept.

Monday morning finally did arrive. The OR was first thing, at 8am. I was actually very calm. There was no more waiting. There was nothing more that I could do. We had come for surgery and I had confidence in the surgeon. Just as I was headed off to the OR, I was very reassured knowing that back home at the DECH there was a prayer service for us, as our colleagues and friends offered their support. Try as I might, I could not hear what was being said back in Fredericton, but I was very comforted thinking about all the support for us back home.

For me it was just a day of sleep. For Jane it was a day from Hell. My sister was with her. They were in a special waiting room for families who might need to be contacted during a surgery. Every person in the room was anxious when the phone would ring, hoping that it would not bring bad news to them. Five hours into the operation Jane had her first call. Dr Taylor had brought in one of his surgical colleagues for help and consultation. They were not ready to stop, but they did not think that they could get it all. He would call back later when he had a further report.

Feeling a bit unsteady, and thinking that everybody in the room was watching her it was Jane this time who needed to get out for some fresh air and a walk. Returning to the waiting room later she got a second call. They had continued on and were not yet finished. He would talk to her when he was out of the OR, at 7 pm. It had been a long day. It was a good thing that I had not been a Friday afternoon add on case.

Of course I knew nothing of any of this. I woke up about 10pm with Jane, my sister and the nurse poking me to wake me up. I have a slight recollection of that. I also remember the resident leaning over me and saying: "We had to take the whole pancreas. You will be a diabetic". I had no reply. I had come for an operation and they did what they had to do. Jane had been a diabetic for over 30 years so how could I complain. I would just have to deal with it as she had done.

I remained in the Toronto General for another several weeks but I will not go on about the post op time except for 2 comments;

1-We were 1000 miles from home, I had had major cancer surgery, and we were there for several weeks. Not once did anyone ask how we were doing. We were in a major teaching hospital and just across the street from the Princess Margaret Hospital, but not one doctor or nurse inquired about how we were coping with cancer and with our situation. The idea of a counselor seeing us was not even considered. Providing any emotional support was not on their agenda.

2-One day an endocrinologist came to see me. She had the whole entourage of students with her. She obviously had come to talk about diabetes and insulin. I replied that I had some familiarity with diabetes but I needed help with my pancreatic enzymes. She paused just a moment and replied that she was an endocrinologist and that enzymes were an exocrine function. She did not deal with that. She offered no help, end of discussion. I felt that this was a real put down. No one in Toronto ever did offer help with the enzymes, which was crucial to my recovery.

We arrived home 3 days before Christmas. It was great to be back in Fredericton. It is never easy to be sick and in hospital, but it is definitely more stressful to be ill and far from home. The support from home had been tremendous throughout our time in Toronto, but even greater and more personal when we were back in Fredericton. As Dorothy says in The Wizard of Oz "there is no place like home."

Christmas was fun but stressful. I ate only small amounts and threw up periodically. It was never spoken, but everyone was wondering if there would ever be another happy Christmas for our family again.

The New Year brought a new series of issues. I had some Chemo, and was in hospital for TPN. Each day the IV would be disconnected as we drove to Saint John for Radiotherapy. We returned to the DECH in Fredericton and I was hooked up for more TPN. Jane would then drive home alone. We repeated this schedule for over a month. Jane did not have an easy time. Some friends would even seem to avoid her as they were totally unable to face her with our cancer situation. Some people just can't talk about cancer. We have heard this from others in our Cancer Support Group. Some were very upset by how their close friends would avoid them, presumably being unable to face someone with cancer. The people that did stop Jane might ask how she was doing, hoping for the short answer that she was OK. What she really wanted to say was “if you have the time then I can really tell you how it is.” That didn't happen very often.

That is enough about me. This story is to give you an idea of some of our issues and our thoughts. I encourage you to ask your patients about their stories. Everybody has a story to tell. You just have to ask them. Each person has their own unique experiences, but the common theme is how the cancer takes over their lives with frustrations, uncertainties and fear.

Why Me-this is the question that has no answer. Dwelling on this issue just causes grief, not reassurance. To focus on the why me question is self-defeating. When faced with cancer myself, I realized that I was no different from my patients. Cancer doesn't only happen to other people. Why not me. I did not torture myself with the Why Me question so I was able to expend my energies in more productive ways.

Having become a survivor, I wanted to help to others going through their own cancer experience. Once you are a survivor you want to give back to others. For me, a major way has been through the Canadian Cancer Society, as a facilitator for our local cancer support group and through Cancer Connection.

How many people here know of the Cancer Connection or have recommended it to their patients?

Cancer Connection is a one-to-one telephone support program through the CCS. If a patient or caregiver wishes to speak to someone who has been through a cancer experience they can then call the CCS to be paired to the best possible match, to a volunteer with a similar experience. The match is usually based on type of cancer, surgery, treatments, age, gender or it can be whatever is most important to the caller. It is ideal for people with an unusual cancer, for those without a local support network, or those who wish to talk from the privacy of their own home and remain quite anonymous.

Unfortunately, there have been very few survivors of pancreatic cancer to become volunteers. I have had calls from all across the country. I have talked to over 100 people as they ask for support. They have had no encouraging reports from their internet searches, and often not even from their doctors. Once you make a contact, it is amazing how quickly you become attached to each other as you share common stories about your treatments, side-effects, GI issues and family involvements. When I tell them that I was diagnosed in 1993, there is a very palpable pause on the phone as they calculate how many years have passed. They immediately feel some hope as they realize that someone has survived for so long.

I contact these people as a fellow cancer patient, and not as a doctor. Usually my role as a doctor is unknown, as it could interfere with our discussions. Now comes the distressing part.  Here are a few comments given to me directly from some of these people.

PAT:      It is hard to be positive when the doctors are all so negative.

SANDY: My family doctor told me that I had 3-6 months to live, and that I was just going to die. I was very negative. I just "vegged"for a month.

CONNOR: The doctors comments have all been negative. The one on ICU implied        that I should just give up treatments and die.

DAVE: The oncologist is terrible. Too blunt and a pompous ass.

RODNEY: The oncologist seems to distance himself from the patients and almost seems not to care, but the staff are great. The oncologist is centered on the chemo and not on the symptoms.

RALPH: The surgeon just said that I was going to die. The doctors have no bedside manners. The nurses are angels. The doctors are behind in caring in quality of life. I felt that I was not told what would happen to me. I was just sent home with a “See you Ross”.

DON: You have to handle the medical profession with kid gloves.  They get testy if they feel you are blaming them.

 

KEVIN: The doctors are so moody.  One never knows how they will be at each visit.

He said "You don't need to know where your parts are. If you are still alive in 6 months then you didn't have cancer."

JOE: We waited for 3 hours at the Princess Margaret Hospital to see the oncologist.  Cancer doctors are always talking statistics. They really threw me off the deep end.

VICTOR: Sometimes I don't know if the doctors are paying enough attention. They just give pills but don't follow through.

NORBERT: They do not hold out much hope for you at all.

ELAINE: The ER doctor said that there was not much hope. Doctors can be very strange. They do not realize the faith that people put in their remarks.

When you are a fellow cancer patient and not a doctor these are the comments you hear. As a physician these statements really hurt. Yes, there were some good comments about doctors and their care, but that is what we all expect. That is what we should be doing-giving help and support, and not doing harm. These people did not get the support they needed, and were not given hope for anything.

There are many articles and books written about hope by people that are much more learned and articulate than I am. My purpose today is to give you direct comments from real patients as they tried to deal with their cancer illness.

I know that I have been very fortunate, but I also have been very determined. I never gave up hope. Not many people had much hope for me, but no one tried to destroy my hope. I believe that one way to maintain hope is to set goals and have a purpose for our lives especially during these times of treatment. I knew that the average life expectancy for pancreatic cancer was 6 months. Looking ahead by 6 months I had a lot of things to do. I had to remain healthy. I had goals to strive for:

-I was going to turn 50

-Jane and I were having another anniversary

-Our daughter was to graduate from Mount Allison University

-I was chairman of the NB Highland Games. It was our 2nd year on the Old Government House property. I was the organizer. I had to be ready for that event. Planning for The Games gave me a goal and the purpose that I needed during those 6 months.

-I also wanted to learn how to play the bagpipes.

8years later I faced a second cancer, prostate cancer. The goal for me then was a canoe trip on the Allagash River in Maine. It was the 40th anniversary for 6 of us who had paddled the river as teens in 1961. Looking forward to that trip kept me going as I went through my treatments.

Having these goals gave me some direction and hope for my future.

Obviously everyone begins with a hope for a cure. Unfortunately with cancer that is not always possible. As we go through our cancer treatments we must hope that every surgery, every chemo, and every dose of radiation will give us some benefit, even if not a cure. We can hope for a remission, we can hope for an extension of our life, we can hope for symptom control. We can hope for good quality of life, and quality time with our family. If our disease progresses we can hope to get beyond the anger stage, and move on to a feeling of peace. Hope should not be unrealistic. Hope may just be for another good day. Hope is not the same for everyone, but hope is our lifeline. Hope is what carries us through all our treatments. Hope for our future is what keeps us going.

The doctor-patient relationship should be a positive one. If we are too blunt, too distant, too direct, or appear uncaring we can easily destroy what little hope our patients may have. We heard this from the previous quotations. Sadly these comments did not reflect helpful, or hopeful doctor-patient relationships.

I do not wish cancer or any illness on a physician. However, once you have been on the receiving end of the medical system, there is an understanding about patient care and medicine that you would never truly appreciate if you had not been on the other side of the table yourself. I know the fears and life uncertainties from cancer that I would not fully appreciate, if I had not been there myself. My patients have known of my health problems. That has allowed me to talk with them in a personal way because of our common issues and a common bond. I believe that this has helped me be a more understanding doctor.

I hope that my remarks today will make you more aware of the trust that patients have in us. We must be aware of the crucial nature of not only what we say, but also how we say it. Our comments will have a tremendous impact on our patients, both positively and negatively. Our attitude can be just as important as our words.

Dr Garfield Moffatt was an internist in Fredericton. He was a great colleague and wonderful role model. He too had a cancer, leukemia. After finishing his chemotherapy treatments, he would put on his lab coat again, and go off to finish his consults. He certainly knew the seriousness of his disease, but was able to be as positive for as long as possible. He was able to set goals for and maintain hope through his cancer journey. One day I asked him how he was doing. I vividly remember his reply “I am trying to make the best of a bad thing”.

My hope is that we can offer support to our patients so that they can make the best of their bad thing. My request today is to please do nothing to destroy a patient’s hope, for sometimes Hope may be all that they have left.

Theme: Death and Dying | Décès et le mourir 
Theme: Health Care Delivery | Prestation des soins de santé
Theme: Patients | Patients
Theme: Physicians | Médecins
Theme: Relationships | Relations
Theme: Teaching and Learning | Enseignement et apprentissage

Stories in Family Medicine | Récits en médecine familiale [Internet] Mississauga ON: College of Family Physicians of Canada. 2008 --.

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