One man’s struggle to maintain sanity in a callous and inhuman world.

Early in November 2001 I was stricken with cancer. This is a memoir covering the events and progress from that time to the present.

When I first reported to my doctor that I had a painful lump growing very quickly in the middle of my back he smiled reassuringly, patted me on the back and told me not to worry but go home and take tylenol for pain. This continued throughout November as I kept returning to the doctor with increase in size of growth and increased pain.

I gave up on that doctor and went directly to the emergency department of the Royal Alex. There they at least did some diagnostic work , then told me not to worry would be attended to in January. There was no admission as to what the problem was causing the fast growing lump on my back. By this time I was on increased pain medication. This process continued through december(increased size of lump accompanied by increase in pain). Finally on December 23/01, I couldn’t take it any more , I went to the hospital and told them I wouldn’t leave as I couldn’t take it any more. At this time I believe they gave me morphine as I remember nothing till they woke me on december 26 to tell my I was going to have to have an emergency operation as I had a cancer on my spine. This was the first time anyone told me what the problem was, All I had been told to this point was that I shouldn’t worry.

When I woke up I was told by a doctor who stood where he didn’t have to face me, that they had removed the cancer from my spine along with a half of one of my vertebrae. As a result I would be paralyzed for the remainder of my life but they had removed all the cancer. I asked what the lump was that was still on the base of my neck. I was assured it was a harmless cyst and would be removed later. I understand why the doctor couldn’t face me He had a lot to be ashamed of for left me without the opportunity of possibly less damage had my problem received more timely attention from a doctor in November.

During the following 5 or 6 weeks I was lying flat on my back and had no consultation with any doctor. Doctors came and went and had chats among themselves out of my hearing (maybe they were deciding on what horse to bet on that afternoon but they would not reply to any question I had)

Toward the end of my stay I managed to get the attention of one doctor and asked to know who my doctor was that I would like to ask about my situation. I said I’ve been here four weeks and I don’t know who my doctor is. He told me he was my doctor and hurried from the room before I could ask any questions. I never saw him again during my remaining stay so I had no opportunity to ask any one anything.

I was then transferred to the Glenrose Hospital where under Dr. Vespreni and his staff, we started to see how much I could regain under physio therapy. It was disclosed that I still had active cancer and I was put on radiation treatment. After this was completed the doctor came in and with a long face told me I still had lymphatic cancer but it was felt that with what I had been through I wouldn’t be able to take the chemo therapy that would be required to treat me. I asked what it would be like and he told me several of the things that could happen to me during chemo therapy. He didn’t make it sound like fun. I said how soon can we get started. And so it was off to another kind of treatment. This kind was a little tougher to take and I was frequently too ill to keep up with my physio. However, under the direction of Pattie Jeske and her helper Yvonne I made some progress in getting some movement in my legs though I still didn’t have much feeling below the hips.

At this time after more than four months in the Glenrose I was told I had used up all the time I was permitted there and would have to be transfered to another hospital. I pleaded to be sent where I could continue to work on my physio. It was decided I would be sent to the Leduc hospital even though I knew no one in Leduc and had never lived there. I was given no choice in the matter.

Before leaving the Glenrose the doctor told me that with the damage done to my spine I would never be able to walk again. However, I was trying so hard, he didn’t know how much I would accomplish. I said, with more bravado than conviction that I would walk in his office some day. He said, “I hope you do”. It was to be a quite a while but one day I did.

In the Leduc Hospital I wasn’t given any physio therapy and in fact I was put on morphine so I couldn’t even stay awake. When I found out why I couldn’t stay awake I refused to take any more morphine. Once the stuff was out of my system I felt much better. However I still wasn’t given any physio therapy and was kept in bed .Naturally I lost what I had gained at the Glenrose. I was still being given chemo therapy untill I had the course with it. Though it was no picnic it was worth it. The cyst on the side and back of my neck (they now admitted to me it was cancer) disappeared quite quickly though my head remained forward and down over my chest. I’ve tried hard to get it up into a more normal position but I don’t believe I can get it all the way. I was told again that I was free of cancer.

During my stay in the Leduc hospital I had no opportunity to consult with the doctor regarding my needs for further physio in fact the only time I got his attention was when I demanded to know why I was given morphine so that I was asleep most of the time day or night. He said he didn’t want me to have any pain. I countered that the patient should be the one to inform the doctor that he needs help in coping with pain, nobody should be put off to sleep just on speculation that he might have pain. No further cancer has been found with subsequent checkups. Since this time I’ve had periodic checkups at the outpatient dept. of the Cross Cancer Institute. Throughout my treatments and examinations at the cancer clinic I’ve been treated with all the courtesy and respect one would expect from health professionals and been keept fully informed of my progress..

At this time, 2002, I was transferred to the Allen Gray Continuing Care Hospital where no physio therapist was on staff and there was no physio training available. I was also told that Ralph Klein had decided that patients having the joyfull time of staying in these luxurious facillities should pay their way, thus regardless of my having paid my way in the medical plan during my 50 years of working I would now have to pay full care costs. Not only that I had no choice in the matter and no physio would be available for me to get, so that I could walk or even get more independant as a wheelchair patient. When I complained about not having the opportunity to get more mobility and independence I was given these comments:

 

“You only have a year and a half possibly two years why are you trying so hard?” 

“This is a nice new air conditioned building and the food is better than any other facility you could get into as a helpless patient”.

To get in to facillities where I could be more independent I would have to show I was capable of more independance. Without physio therapy I had no way of getting that capability. I even heard the ironic comment from a staff person,

 

 

“Patients leave this place only one way and it isn’t walking.” 

When I was taken to my room there was an overhead hoist rigged up to pick patients out of their wheelchair and transfer them into bed . I refused to let them do that with me and over their objections I transferred myself. I felt if I don’t keep up with the few things I can do the doctor will be right, I’ll not last long.

The room I found myself in was on the third floor. In the ward I was in, I, was the only coherent patient. Thus I spent the next fourteen months in a ward where many of the patients were not only incoherent but went around letting out a variety of noises. This of course meant it interfered with my ability to enjoy my music (try listening to Schubert with some one who is screeching incoherently coming in your room.) I would go to the staff and ask that they take the person out of my room. The staff had a lot of work to do and couldn’t be monitoring the activities of all the patients, this I understood but at the same time I was paying dearly for this luxurious room that I didn’t want to be in I needed some privacy to listen to music , work on my computer or just read.

When they told me to be more understanding of these unfortunate people I told them I could be just as understanding as they if I had the luxury of escaping like them to my quiet living room the way they did when they went home from work. I lived in these conditions for 13 or 14 months. The only coherent people were the staff and they were far too busy to provide any companionship.

While in the Glenrose, I had developed a skin problem that the doctor immediately reognized as a sensitivity to the hospital laundry. The solution was to have my laundry done separately with a detergent I wasn’t alergic to. When this problem came up at the Allen Gray, the doctor wouldn’t listen when I told him of my needs to have my laundry done separately, he justprescribed a salve to be applied to the affected area. The salve reduced the itching but did not clear up the pustules that continued to form on my upper body and arms. I kept protesting that the pustules would stop forming if they would make arrangemants for separate laundering of my things in a milder laundry material.

They ignored my needs. Finally I had someone bring in a change of laundry for me that was done by my son. The bedsheets didn”t fit but I knew right away I was going to be relieved. I didn’t know how I was going to manage on a continuing basis as my son lives out of town and this was going to be a major prblem. The doctor , on seeing what I was doing finally after my having those pustules for six months agreed to have my laundry done separately. My skin problem cleared up as soon as this was done. When previous experience at the Glenrose had shown the solution why should I have had to wait six months to get help?

Seeing my needs for physio help, Evelyn Ching the occupational therapist did some checking around and made arrangements for me to go to Steadward Center for physio therapy! At last I had some hope!! I had to take a DATS bus and it was a long ride to the university area where Steadward is but I was sure glad to get some hope . With my weakend condition I was frequently hurting during the rough ride. As I gained stregth I was able to take the bus rides better.

With therapy I was soon getting stronger. When I got sufficient strength to live in an a seniors assisted living facility I made application to several places . By January 15 of this year I was able to get out of the Allen Gray and move to an assisted living facility. Do you Know what it’s like to be able to listen undisturbed in private to some music??? What joy!! Also I was down town so my busrides were much shorter and I was closer to everything. By this time I was able to stand with help and go short distances with a walker.

March 3rd I started at Corbet Hall working on the treadmill with Kelly Brunton. What a happy day ! I knew this was hope but really I had no idea how much I was going to progress. For months I had been saying I was going to walk again but did I really believe?? I wasn’t long working with Kelly, I started to believe. In addition in contrast to what my life had been like at Allen Gray I now had people to talk to.

Everyone in the CARE center is cheerfull and friendly. They keep you informed about how you are doing in short they treat you as though you’re human. More than that they are all helpfull and friendly. After my time in Allen Gray with no one to talk to and not even having music I was now in heaven in addition to now believing I would walk again. Once Kelly got me doing well on the treadmill I was put in the care of Colleen. What a delight full slave driver. Just when things were getting easy she would come up with something to make it tough. The months I was working with them were among the happiest times of my life. How can you be going to work every day and progress a measurable amount, like being in a sport and winning every game you play and not be happy???

I’ve now left the program I’ve gone back to working out at Steadward Center to make sure I have enough strength to take full advantage of my walking skills. I’m 78 and just as I was graduating from the program I had a medical setback that may have some limiting effects on my future. I may have epilepsy. The doctors are now trying to determine what the source of the problem is. Unfortunately it’s not something I can help by working hard. As with many things in life it’s just something to cope with. Whatever happens I’m gratefull for the new lease on being able to enjoy whatever is left for me. I’m certain that if I had accepted what the doctors at Allen Gray had in mind for me (right down to having to be transfered from wheelchair to bed and back using a hoist and never giving my body the workout it needed to rebuild) if I wasn’t dead by now I’d be wishing I was.

A few observations from the patients point of view:

When the doctor tells you that you have a fast growing tumour is is nothing to worry about, just take some pain killer. Take the pain killer and run don’t walk to find a decent, ehtical doctor who will do what he’s paid to do, promtly get you the best help possible, to cope with your problem in a timely manner.

A person who is paralized and lying helpless on a bed is deserving of respect and treatment as s human being. His needs for communcation regarding his problems are and always will be one of the prime responsibilities of the doctor. To take advantage of a person in that helpless position by not even aknowledging his questions is to be the worst kind of bullying imaginable. Take note all doctors in the Royal Alex , and the Leduc hospital.

It’s no excuse to say that doctors are too busy, I’m currently being treated for a major problem at the University Hospital and the doctors there have been courteous and professional in that they take the time to explain matters so that the patient knows what he is up against. The same is true of all my dealings with the Cross Cancer Hospital.

Just put some salve on it and ignore it when the patient tells you what help he needs to completely solve the problem is not satisfactory medical practise. Is that the standard when the patient is helpless and unable to speak?? Just put some salve on it never mind trying to find out what cure there might be. Is that what is taught in medical school??

Thank you all the Physiotherapists I’ve worked with, you all are dedicated prof essionals and it’s been a wonderful rewarding experience working with all of you I just wish the same high professional standards prevailed throughout the medical professions.

Nearly a year has passed since this saga was written. I’ve continued to enjoy the freedom my limited physical condition has given me. I’ve been able to make a visit to the mountains that were my home. I’ve been able to enjoy family and friends, going to concerts, in short I’m having a wonderful time enjoying this period of my life. I keep in touch with all the therapists who were so wonderful to me with their professional dedication I will always have a special place in my heart for them.

-Ed Newcombe