Geoff RIP 2006.9.22 updated:2007.1.25

START here thymoma.de

The late stages of thymoma 2001.08.26

Letters 2002.10.8

Anne's caregiver story 2007.1.25

Please, tell us your gender and your age and maybe a short discribtion about yourself, family, profession....	00.05.27 Geoff, male, age 47. Married, two children (ages 18 and 20). Mechanical Designer. Living in Red Deer, Alberta, Canada.
How was your cancer detected?	After a loss of voice, via an ear,nose and throat specialist. First thought to be lymphoma. Weakness in legs indicated polymiositis, and hence thymoma.
Did you feel any kind of pain or did you notice a change of your body?	Overall weakness of muscles, especially neck, legs, and breathing.
Do you know your staging?	Was 4B prior to surgery in February 2000.
Do you have a family history of cancer?	Yes, on my mother's side of the family.
Did you have any kind of surgery before?	Previously I have had a hernia operation.
What kind of treatment did you receive -surgery	Most recently, open sternum surgery. The surgeon removed as much of the tumor as he could, and in process removed the nerve to the diaphragm, a piece of a lung, a piece of the sac around the heart and lung, and blood vein to the brain. (Feb 2000)
-chemotherapie	First, because of the extent of the tumor, I had chemotherapy to try to reduce it. Four sessions of chemo at three days each. (July/August 1999)
-radiation	Then, radiation treatment. Five weeks duration. (October/November 1999) received a lifetime maximum. Reiki. Five weeks during radiation treatment.
Where there any kind of side effects involved in your treatment?	Chemo: Loss of hair-temporary. Loss of sense of taste. Thrush in the mouth. Loss of appetite. Tingling in hands and feet. Red blood cell count went extremely low, requiring transfusions. Radiation: Severe tiredness after about the third week of treatment. Transfusions continued, to a total of 24. Surgery: Weakness in limbs. Tired. Depression. Short of breath. Difficulty in moving due to incision--now improved. Distended bowel--now ok.
Feelings - Emotions What was your feeling when you heard your diagnosis? How did you feel during treatment?	First response; relief at finally finding out what the problem was. Determined to do everything to fight it. Nausea was not a problem. I was given very good anti-nausea drugs. Lost a lot of weight. Not self-conscious about loss of hair, although family and friends sent lots of hats! During radiation treatment I was very lonely as the hospital was in another town, and I could only see my family at weekends.
What was the most difficult part during your treatment	Getting over the surgery has been the most difficult. Also, learning that there is nothing more that the doctors can do for me.
Where were you treated	Foothills Hospital, and the Tom Baker Cancer Center, Calgary, Alberta, Canada.
Can you recommend your doctor?	I can heartily recommend Dr. McFadden, surgeon, and Dr. Don Morris, chemotherapy oncologist. Dr. Alex Balogh is also very good as the radiation oncologist, but his bedside manner is not so good.
What tip could you give a new patient?	Keep a record. I was given a small note book in which I kept track of treatments, decisions, etc. It also helped me to keep track of the date. It has been invaluable in explaining (countless times!) the course of my treatment. I don't think anyone actually reads the official medical file. They just keep asking the patient what is going on.
What bothered you the most during your treatment?	Being in intensive care unit for a week, on the cardio-pulmonary machine. I could not sustain my own breathing, and this was scarey.
What helped you most during this period?	My wife visiting me. Having patience.
How're you feeling today?	feel ok. Not too strong, but mentally active.
Tell us a bit about your check-ups - Where do you get your check-ups - How often do you go for a check up? - What do they do at your check up?	I will be seeing Dr. Balogh in July for my second, post-surgery check-up. I will get a CT scan at the beginning of June. I go every three months. He looks for lymphoma lumps in my neck and groin.
How do you feel before you have to go to a check up	I am not nervous. It is a bit tiresome to have to go into Calgary, and I get very tired.
What do you do to make this time as easy as posssible?	My wife drives me there, and stays with ;me during the check-up. We listen to books on tape while we are in the car.
Do you take any precautions to prevent the recurrence from cancer?	I am now practising visualization and relaxation techniques.
Have you made significant changes to your life after you got cancer?	I no longer work or drive. I am learning to paint in watercolors. I don't do gardening or cooking any more but I read a bit, and watch more tv and videos.
How 're you feeling about the disease	Yes, I am optimistic and Yes, I am afraid that the cancer may grow. This seems contradictory, but keeping a positive outlook has served me well so far.
Status - how is your progress?.	Chemo had very limited effect on the tumor. Radiation reduced it quite a bit, so that when I went for surgery it was about the size of two fists. The surgeon was able to remove more than half of it, but some is still wrapped around nearby vital organs, notably the aorta.
Ideas / recommendation	Allow yourself to be selfish! Now is your time to be looked after, and to have people visit and do things for you.
Contact	anne112price@shaw.ca

August 2001
This is an update on Geoff’s experience with thymoma.
As some of you know, Geoff has been living with this for over 2 ½ years, and has been supported by loving family and friends throughout this time. Sue and Joe thought it might be helpful for me to share our experiences in the hope that they may benefit others in the late stages of this illness. I (his wife, Anne) am writing in the hope that this may allow you to prepare for some eventualities, but I regret that the prognosis for Geoff is not good.
He has had chemotherapy, radiation treatments, and surgery (in that order). The chronology of his illness until February 2000 is one of those on the thymoma.de website under “Personal Data 2”. Since that time Geoff has endured two broken vertebrae, which kept him hospitalized for some time, a kidney stone, problems with anaemia, and difficulty in transmitting oxygen to the brain.
We have both learned how to spend countless hours in hospitals—notably in waiting rooms—and how to survive long car rides to specialists. (If you are wondering, it takes books on tape and knitting. I also marked my students’ papers sometimes.) I have found that getting impatient and becoming angry with health care workers does not help. They respond better to clearly defined questions and determined eye contact from patients and families.
We have found the following activities to be invaluable:
Keep a notebook. We have noted interviews with specialists, changes in treatment, and recommendations for diet and exercise, etc. We found early on that our memories were not up to the task, and the interviews seem to be over so quickly!
Keep in touch with friends and family. This role has fallen mostly to me, and initially I sent emails each time there was some diagnostic change. Lately it has been a more rare communication indicating no change for some time. I relied on some family members to notify those without computers. For at least a year and a half I did not want to talk to anyone on the phone. Most of my friends and family understood this. I only had to hang up on one person.
Buy a reclining Lay Z Boy armchair with vibrator and heater. Geoff has practically lived in it since his illness began. It is the only place he feels really comfortable. (An adjustable bed would probably do the same sort of job.)
In June of 2000 Geoff had a CT scan that showed that the tumor bulk had decreased (because of surgery) and there were no new signs of disease. Since that time his hemoglobin level has been regularly monitored, and he now has a blood transfusion of five units every six weeks or so. It seems that his body is now unable to create its own red blood cells as a consequence of chemo and/or radiation.
During the summer of 2000 Geoff rediscovered an artistic talent that had lain dormant for many years. He created numerous drawings and paintings, and produced a calendar that we sold on behalf of the local cancer society, raising $500.
In November 2000 Geoff was unable to get up after doing floor exercises. It transpired that he had two broken vertebrae. These vertebrae are, essentially, dead. Since red blood cells are created in the bone marrow, Geoff now is unable to create new blood. He was hospitalized for six weeks, and was discharged with a body brace and wheelchair.
In December of 2000 Geoff had a lithotripsy to remove a kidney stone. His digestive system has been generally deficient since radiation treatment, and he must use a stimulative laxative every three days
As I write, Geoff has settled in to a routine at home that involves taking numerous medications. He is unable to walk more than a few paces, but manages to get himself dressed, get to the bathroom, and get to the living room from his bedroom. He reads, watches t.v. and answers the phone.
Among his medications is methadone, and it is my belief that this is largely responsible for the changes in his mental health. Geoff has, until recently, been very clever and has had a remarkable memory. Now, however, he finds it difficult to follow the plots on cop shows and forgets where I have gone after I have told him where I was going.
His condition is now stable, and he has home care workers to bathe him and to keep him company for two hours a day, four days a week.
When Geoff first became ill he had innumerable letters, flowers, and telephone calls. Now we have one friend who visits weekly, and his father telephones from England weekly. If he is lonely, though, he does not complain of it. He seems to be lost in thought much of the time, and dozing much of the time.
Throughout all this time we have been supported and inspired by the other people who use the thymoma.de website and message board. We have found answers to questions, and support from caring people. Thank you to all of you.
I will be happy to write to or chat with anyone who would like to contact me.
I am at anne-geoff@shaw.ca.and I check into the message board regularly.

News from e-mails:

2000.04.04
I have a malignant invasive thymoma, and have been through chemotherapy, radiation treatment,
and surgery. The surgeons were unable to remove all of the tumour.
Currently, I am awaiting their determination for the next stage of my treatment.

2000.05.05
This will be a chronological listing of treatment.
October 16, 1998, lost my voice, Ear nose and Throat Specialist thought it was lymphoma, sent
to Oncologist here in Red Deer.
November, 1998, Oncologist said it was Non-Hodgkins Lymphoma; prescribed Prednisone pills. December, 1998, had a bone marrow biopsy and a lymph gland biopsy but nothing unusual was determined.
March 1999, Lymph nodes shrank back to normal, reduce prednisone usage.
April, 1999, started getting weak in legs and neck, shortness of breath.
May 24, 1999, went to emergency at Red Deer Hospital because of complete weakness and
tiredness, and panting.
Blood test revealed very high CK count (higher than a man having a heart attack).
Oncologist thought it might be Sarcoidosis, But was advised that I should go to Foothills Hospital
(a teaching University Hospital with lots of Specialists).
May 29, 1999, entered Foothills Hospital, very weak, unable to walk or take a shower unaided.
June 5, 1999, diagnosed with thymoma with secondary polymiositis and myosthenia gravis in right
eye.
Started chemotherapy that day. Duboroxin and cesplatin were drugs used over course of three
days.
June 8, 1999, Biopsy on thymoma through rib wall revealed that it was cancerous and large, I was
unable to undergo general anasthetic and so had a local with morphine.
That night I was unable to support my own breathing and was sent to Intensive Care Unit and
placed on breathing machine.
Simultaneously, I had no strength to swallow and had to be fed through a stomach tube.I stayed in Intensive Care for 5 days.
July 12, 1999 (about), stomach feeding tube removed. I was now 72kg instead of my normal 92kg
I am 1.95 cm tall. I was transferred back to Red Deer for remainder of Chemo-therapy.
Total of 4 units, each unit 3days, at 3 week intervals, completed in late August, 1999.
October, 1999, started Radiation Treatment at Tom Baker Cancer Clinic at Foothills Hospital in
Calgary. Weight by then back to normal, but legs still weak although I could walk.
Also did Physiotherapy and had Reiki treatment twice per week.
November 30, 1999 Radiation Treatment complete, but tumour still there.
February 29, 2000, surgery, open-sternum type to de-bulk the tumour.
April 28, 2000, visits to Specialists. Chemo-Oncologist said that chemo-therapy had been
basically ineffective on my tumour and does not see the purpose in doing it again.
Radiation Specialist said that I've received the life-time dosage of radiation and if I receive any
more I would be paralysed.
The surgeon showed me the X-ray and that revealed the thymic carcenoma was about the size of a mandarin orange behind the left collar bone,
He said that he had shaved as close as he dare, any closer and he would have killed me!
This was a class 4b tumour.
The surgeon cut out the nerve to the left side of the diaphragm, a blood vein to the brain, a portion
of my left lung, part of the sack around my left lung and a portion of the sack around my heart.
So now I live each day with quality and positivity in mind enjoying my wife, family and friends.
I am looking into receiving more reiki treatment.

2000.08.03
Reluctance about surgery
My surgeon was also reluctant to operate and waited for the completion of both chemotherapy and radiation which they say is not as invasive!
If the chemo and radiation successfully work by reducing the tumour completely then the surgeon
does not have to open up the patient. In my case I still had a large mass which had to be de-bulked
and surgery was the 'last' option.
The surgeon made reference to reluctance such that he wanted to minimize the number of organs he
had to tamper with, dislodge or jostle around.
It is a very long operation (mine was 8 hours) and leaves you with a huge scar down the length of
the breast bone. This leaves you in pain and incapacitated for several weeks (some people months)
There is a chance of not surviving surgery, being in 'Intensive Care" with pneumonia, picking up
viruses like 'C-Difficile' which if undetected is also a killer.
Needless to say I was told here in Western Canada that 10% of patients undergoing 'open chest' (sternotomy) operations do not survive; this of course includes heart bypass patients.

2000.08.03
I had some myasthenia gravis as a side effect to the thymoma and it still persists a little.
I was diagnosed with thymoma last June(99) at the same time I was losing the ability to swallow
and to focus my right eye. The bottom eyelid of my right eye was rather droopy, the eye was
always wet with tears and the view out of the eye was "foggy".
I lost complete ability to swallow in late June and lasted about 5 weeks.
I was fed via a tube directly into my stomach, via my nose.
The Chemotherapy that I was receiving somehow improved things such that it prevented enzymes
from the thymoma attacking the muscles.
However, my right eye got worse such that by September '99 I could not see out of it and I wore
a patch over my eye.
Sometime during radiation treatment in November '99 the eye cleared considerably, although all
this time I had been taking Prednisone which is the main medication for Myasthenia.
Now my swallowing is excellent and my eye is quite good although it is a little 'foggy' - like it's not
quite in focus and some days are better than others.

2000.08.07
I am feeling quite good today and will paint some more - "old" buildings around Red Deer, all of
80 years old!

Here's a quote for all those patients who have gone bald from chemo,
"Many a man hath more hair than wit" W. Shakespeare, Comedy of Errors, Act ll Scene ll.

2000.09.01
Geoff has had a setback in his recovery and is in the hospital at the moment.

2000.09.12
1 Septemeber
As some of you already know, we have had a roller-coaster week. To make a longish story short,
Geoff is in hospital and doing ok.
However, on Wednesday we thought the end was nigh.
To backtrack just a little more: on Monday Geoff was doing some breathing exercises on the floor,
and was unable to get up. I was not able to move him myself. He was also having back spasms, so
I called on my friend and neighbour to come and help. Together we realized that this
was more serious than we could deal with, and we called for an ambulance.
Geoff was admitted to Red Deer Regional Hospital and given pain killers while awaiting various
test results.
On Wednesday I was called at work by a nurse on Geoff's unit.
She said I should come in right away.
Geoff had stopped breathing, and was being given artificial respiration.
He was also in a coma, which I have since learned was drug-induced.
While I was there his heart stopped, and I was asked to leave. Geoff was revived, and taken to
the Intensive Care Unit, where he is today.
However, today he is off the various support systems, and is recovering from his setback.
The doctors and nurses are quite amazed at his recovery.
He is also free of back pain, which is a circumstance no-one seems to be able to explain.
The speculation is that he had had a misplaced vertebra, and that the efforts to revive him put it
back in place.
Whatever works, I guess! Today he is very tired, and a little weepy, but otherwise very alive.
Geoff's sister, Vivien, arrived today and his parents arrive tomorrow.
He will be very glad to see them all. He appreciates all your kind thoughts, actions, and loving
concerns in general. We are all immeasurably grateful for our wonderful support system.
With much love, and an intent to write...sometime

10 September 2000
Geoff is now out of Intensive Care, and in a regular ward. Apparently he has a compressed and/or
broken vertebra between his shoulder blades, and it is virtually impossible for him to move.
He has had a chest infection, which is what caused the breathing difficulty, but that is now cured.
They are in the process of designing a back brace custom fit for Geoff. He can't use the standard
fare because they restrict his breathing and he has only one lung working.
So, in the meantime, he is lying in his hospital bed trying to stay awake on huge amounts of
painkiller. But, don't feel too sorry for him. He is actually a little high, and is talking a mile a minute.
I started teaching at the college again last week, but thankfully my schedule is such that I can visit
with Geoff in the afternoons and see to various new necessities.
One of these is to look for a wheelchair that is more suitable than the portable one we now have.
I am also debating the need to either make this house wheelchair accessible or buying one that is.
But, that won't happen in a hurry.
Geoff will have to be prone for about two months until his back heals.

2000.10.10
Geoff is still in hospital. He has recovered from a chest infection--although I never did find out
whether it was pneumonia or bronchitis. He is now waiting for four broken vertebrae to heal.
This problem was apparently caused by the use of steroids for two years, which weakend the
bones. It may also have been the unusual amount of travelling about we did while on vacation.
I bounced him around a bit in that wheelchair!
He has been lying on his back for six weeks now, and has just received a body brace.
This is like a turtle shell in two halves, and he must wear it whenever he is out of bed.
Right now that is about 15 minutes a day.
The doctors are talking about sending him home, but I have some anxieties about this as he still
cannot get out of bed unassisted.
An occupational therapist is coming to our home tomorrow to see what assistance we may need.
I work full time, so I need to be reassured that Geoff is ok at home alone.
We have also been discussing the possibility of moving house because we have stairs at all three
entrances to our home. I suspect that Geoff may be unable to use stairs for some time and may be
confined to a wheelchair.

2001.01.22
After a very dificult week, Geoff is more like his old self today. The pain seems to be under control
and he is no longer anaemic.

2001.01.25
Geoff is looking good. He keeps on defying death!
Everyone around here thinks God (or the fates, or whatever) have something for him to do.

2001.05.02
Geoff is holding his own, and is maintaining a quiet lifestyle punctuated by visits from various
nurses, caregivers, and friends.
His tumour has not grown or changed, and his physical problems now concern his inability to
develop new blood cells.
Pain related to bone damage is under control, and he spends most days reading and watching tv.
He also has physiotherapy on a regular basis, reiki treatments, and home care aides who provide
lunch and company while I am at work.

2001.05.17
Geoff is holding his own, and his blood count is much better since he had a larger-than-usual blood transfusion last week.
We are getting two of his drawings framed as our anniversary present to each other.
It will be lovely to see them in our living room.

2001.06.16
Geoff has been on oxygen at home for some time now. He has also been receiving regular blood transfusions. In fact, he had another 5 units just two days ago.
He is very weak, and he has seen a hematologist to find out what the problem is.
Unfortunately, it seems as though this is how he may be expected to continue living.
He had been on a respirator at the hospital some time ago, after the surgery.
After a while, though he was able to breath on his own.

2001.08.21
Geoff's condition now is stable, but his quality of life is not good.
He cannot walk more than a few paces and the methadone is limiting his brain function.
Occasionally a little of the old Geoff shines through, but most of the time he is very sedentary,
sleepy, and quiet.
I find it hard to give advice on the web site because we seem to be in the down phase of the illness

2001.12.06
There seems to be very little for people in the latter stages of cancer aside from religious and
quasi-religious homilies. These have their place, of course, but are not terribly practical.
As time has gone on I find myself becoming impatient with offers of help that are not practical!
I know that is not everyone's experience,but there it is.
Recently I have been looking into respite care for Geoff in a nursing home so that I can take a
vacation next year.
This was a huge step and, after many tears, I think it will be a very positive move.

2002.01.03
We managed the holidays fairly well and were able to maintain a semblance of the usual traditions.
Both our children came home for the holidays and it was good to see them.
Geoff managed to sit up at the dining table for Christmas dinner, but otherwise-he slept most of the
time.

2002.03.06
Hi Sue and Joe, Since I last wrote, Geoff's condition does not appear to have changed, although he sleeps even more now. About two weeks ago a CT scan revealed that the tumour is now 2 x 8 x 20 cm and reaches to the abdominal wall. No further treatment is possible or anticipated. Geoff spent a week in a nursing home in February, which allowed me to visit my sister in California. It was a wonderful treat for me and I came back with a spring in my step. Geoff was not so thrilled with his experience! He said the little old ladies kept coming into his room to look at him. He doesn't really want to go into a nursing home again, but I have three weeks booked for a summer vacation. We will discuss whether he goes into the nursing home or has a family member stay with him at home. He doesn't really want to do either of those things, but I feel sure that it is important for me to have a vacation. We have talked about what Geoff would want for the disposal of his remains after he dies, and what he would want for a memorial service. This was mostly for my benefit, so that I know I will do what he would prefer. He didn't seem to be troubled by the conversation. In fact, he doesn't seem to get emotional at all these days; I think that is partly an effect of the medications.
If anyone would like to contact me, my email address is now Anne-Geoff@shaw.ca.

2002.5.30
Hi Sue and Joe,

Thanks for the email and for thinking of us.

Basically, it is a pretty crappy situation, but we continue. Geoff sleeps
most of the day and I go to work for as long as possible. (There are
home-care providers who come during the day.)

Geoff's health is in a very slow decline, but he manages to smile when I
come home and to comment (usually negatively!) about my cooking. He doesn't
move from his armchair except to go to the bathroom and to bed at night.

It seems as though your experience is pretty unusual. Thymoma is such a
slow growing cancer that it becomes a slow demise. I am sure you are
grateful for your remission, but I wish I knew more from people who were not
so fortunate. I know that sounds grim, but this is a very isolating
experience.

As you can tell, I am not optimistic about Geoff's health.
At the same time, I am thankful for the people I have met through the
website and with whom I continue to correspond.

I have found the www to be a great solace, and wonder what I would have done
without it. This situation has taken me through all the seven stages of
grief and a few more not discussed in the books. I have also discovered
that I am looking forward to the next stage of my life.

I got my hair cut today and my hairdresser proved to be a more effective
psychologist than my psychologist! Such is life. :"

Hanging in.

Anne

2002.7.18
Hi Sue,

Thanks for keeping in touch. My vacation plans changed, mostly because
Geoff made it very clear he did not want to stay in a nursing home during my
absence. (I spent a week in California in February and during that time he
was in a nursing home and hated it.)

He was also very anxious about my suggestion that I might be gone for up to
three weeks.

So, in the end, one of my sisters--Carol--has arranged to come and visit
with me here. In fact, she will arrive today from England at Calgary
airport. She will be here for nearly two weeks and for about five days of
that time she will take care of Geoff while I stay with a friend.

Geoff is very particular about whom he will accept as a caregiver, and Carol
is one of those people. Fortunately, she is happy to do this for us. At
least, so she says....

My friend, Jean, and I are planning to indulge ourselves in massages, red
wine, and walks in the mountains.

What about you? Are you and Joe planning anything special this year. You
always seem to manage to get around a lot. Enjoy your freedom of movement!
I envy you. :)

Best wishes,

Anne

2002.10.8
Hi Sue and Joe,

Thank you for remembering us. I realize that my communications with you are
intermittent at best. Even so, I think of you both often and am very
grateful for all the advice and support you both give.

It is really hard to tell how Geoff is progressing since the changes seem so
slight and the duration seems so long. However, he remains relatively
cheerful and doesn't complain much! This is a good thing, because I am the
one most likely to lose my cool . :)

I have resigned myself to the fact that the end is not near, but may be some
distance away. As such I have arranged with friends for Geoff to be taken
care of once a month so that I may get away for a weekend. I have started
this regime last month when I visited our children (each in different
cities) to arrange their college funding.

Tomorrow I will be visiting our daugher, Nancy, and she will provide me with
supper. I have no doubt it will be pizza. In addition, I have promised that
I am coming to see her, not her apartment. :)

Please have a wonderful time in Florida. I often think that you are
vacationing as proxy for the rest of us. Not that there is any pressure on
you in this!

Best wishes

Anne

2003.4.24
Hi Sue,

Thanks for keeping in touch. I was looking at the website earlier and
realized that my piece on 'the late stages' was quite premature. I wrote it
in August 2001 and here were are STILL in the late stages. Geoff first
became sick in November 1998 and it is hard to believe that he has been
housebound and practically immobile since the spring of 2001. I wonder how
many cups of tea I have made in that time :)

You are right in thinking that I don't have family nearby, and I know that
they would be a big help if they were here. However, I do have a number of
supportive friends who have offered to help out. In fact, I will be going
to UK in May to visit family and to attend two work-related conferences. I
will be gone for over three weeks, and a combination of family and friends
will take turns to care for Geoff while I am away.

I would have preferred that Geoff go into a nursing home, but he disliked it
so much last year that I am very reluctant to arrange it again.

In fact, my mother--who was recently ill--went into a nursing home and
discharged herself after one day! She described it as a 'velvet prison,'
which I thought was very creative of her. However, it means that my
brothers and sisters have to take turns in caring for her and our father.
They are both 93 and still living in their own home.

A combination of my parents' declining health and Geoff's continued demise
have been hard on me emotionally, and the war in Iraq tipped the scale into
depression for a while last week. It isn't so bad that I give up, but I do
lose my temper more often these days. I'm not as nurturing with Geoff as I
feel I ought to be, and I drink a little more than I should, but I have lots
of people keeping an eye on me :) I feel fortunate that friends and family
allow me to talk things through with them, no matter what mood I am in. When
Geoff first became ill I was in shock and couldn't talk about it, but as
time has gone on I have found it much easier to tell people the truth about
Geoff's health and my emotions.

There are times I wish there were a support group of some sort, but as it is
I know enough people who have had to think about such things as nursing
homes, long-term care, and various other frustrations that I already have an
informal support group. Even if they haven't actually experienced some of
these issues, they don't mind listening to me talk about them.

I spend a lot of time on the computer in the evenings now and through emails
and chats have been able to place my mind beyond my own world and gain some
perspective. In fact, I don't know what I would have done without it. the
Thymoma website was the beginning of that, and I am very grateful.

Thinking of you and Joe,

Best wishes,

Anne

2007.1.25

Dear Eva and Joe,

Thank you for your kind words and for continuing to maintain the Thymoma
website through all your various life changes. It has been a big help to me.

I apologize for not replying until now, but I am only just beginning to
be able to look back on events with a view to writing about them. If my
words can help others, I am happy to provide them, but I do so with the
caution that my experience is unique and my choices may not be right for
others. I write this with, admittedly, some bitterness and a lot of
regret, and so I hope your readers will understand and forgive me.

Just to recap, Geoff became ill in November 1998 and his various
treatments have been recorded on your website so I won't detail them
now.  As you know, he died on September 22nd 2006, having lived for
nearly 8 years with thymoma, its side effects, and the effects of his
medications. At various stages along the way I was lead to believe that
his time was short and, in fact, his heart stopped and was revived
twice. This sense of impending death had both positive and negative
consequences. It enabled us to prepare in a number of ways.  We talked
about his wishes for his possessions and his remains.  We also made
decisions about his Personal Directive (living will) and palliative
care. In fact, because we thought his time was near, we made those
decisions five years before he died, which gives you some idea of the
slow development of the disease. I consider that this was a very good
thing--to be able to talk about and make plans for his care and for the
things to do after he died. We also ensured that as many family members
as possible were able to visit with him.

I have felt rather 'out on a limb' in terms of making decisions for him
and about him all the way along, but I have had good friends and family
members who have been fully supportive of all my choices. I think most
people--if not all people-- are sympathetic to the difficulty of the
process and the lack of experience we all have in these things.

We went through a period that was particularly difficult for me in that
Geoff had determined that he wanted to be revived if his heart or lungs
ceased functioning. I wanted to fulfill his wishes, but they were not
mine. I would have preferred to have let him pass on rather than for him
endure more illness and for me to have to endure more years of caring
for him.  Yes, I was selfish, but I was very, very tired of it all. I
had been his primary caregiver for so long, and had been obliged to
provide meals, snacks, medications, and cups of tea, day after day, 
night after night, for a very long time. I wanted it to end. Geoff spent
over five years sitting in a reclining armchair in the corner of our
living room.  He watched tv and my every move.  Our children moved out
within a year or two after he returned home from the hospital, although
I don't know to what extent that was the usual nest-leaving or avoidance
of a tense and rather sad home environment. This meant that I was going
through menopause, the death of my husband, and empty-nest syndrome all
at once!  Yes, I felt sorry for myself, and yes, I drank too much. I
also went on the Internet and found thymoma.de as well as a regional
caregivers website and a penpal website.  Through those electronic links
to the world, I clawed my way back to some semblance of normalcy over a
period of about 3 years. The good news is that out of this I have met
some wonderful caring Internet friends, some of whom I am still in
contact with.

I became aware that the ongoing needs related to Geoff's incapacity were
more than I could handle alone.  I did it for many years on the
assumption that the end was in sight, but when it evolved that the end
was not as near as we all thought, I decided to switch tactics.  I
contacted an organization that brought in caregivers from a developing
country. The caregivers were willing to live in and to be paid an amount
I could afford.  Despite a lot of letter-writing and form-filling,
however, this did not work out.  Having thought about and looked forward
to getting live-in help, I decided to arrange for that myself and
invited a friend of the family to move in with us.  He had been
separated from his wife for some time and had been living in very modest
accommodations, so the opportunity to live in our house looked good to
him.  It turned out to be a good trade-off.  He lived with us rent-free
and in return took over some of the caregiving duties.  This also
allowed me to leave town once a month to visit my son in Calgary and my
daughter in Edmonton. Previously I had requested state-funded homecare
for these trips, but their reliability was hit-and-miss. (Once I phoned
home on a Sunday to find that no-one had visited Geoff since Friday!)

So, with the help of our friend, Geoff's last year at home was the least
stressful for me.  However, in December 2005 Geoff's condition was
particularly bad and the homecare nurse, the family doctor, and I agreed
that he should be in palliative care.  We were very fortunate to be able
to get him a place at a local hospice. It provides excellent care in a
home-like atmosphere with very caring staff and volunteers.  We were
able to fund this through a combination of insurance policies and my
income. It was tight, but well worth it.  At that time we expected Geoff
to die within the month.  As it turned out, though, the good care he
received enabled him to live for nine more months.

During that time he was visited by his father and two of his sisters who
came over from England.  Also, he had regular visits from one family
friend and occasional visits from many others.  He preferred to stay in
his room nearly all the time, but particularly enjoyed the deep jetted
bathtub in which the staff put bubbles.  It was the best part of his
days there. At first Geoff had not wanted to go to the hospice but after
a few weeks he agreed that it was the best possible environment under
the circumstances. He enjoyed visits from various staff and volunteers
and spiritual guidance from a minister. He also revised his Personal
Directive, giving me the authority to make decisions about end-of-life
treatments. When Geoff died I was glad that I was present, as were our
children and son-in-law. It seemed right. We all felt the loss, but also
great relief.

It seems somehow crass to say that I was glad it was over, but that is
how I felt. The illness put an immense strain on our relationship,
especially since he chose to sleep alone for most of that time.  I never
stopped loving Geoff, but I did stop liking him some of the time, and I
very much resented that I had lost my companion at a time when I needed
support and encouragement the most. I did all kinds of things to try to
anticipate the future--including tarot card readings and so on!--but in
the end I simply held fast to my vow to be there for him 'in sickness
and in health.'  Whoever came up with those marriage vows knew what they
were talking about!  But, I don't think they anticipated our modern day
medical treatments that can prolong the dying process.

As you can tell, I have very mixed feelings about it all.  I wouldn't
have wished him dead, but neither would I have wished for him to live so
long on pain medications.  Geoff took 35 pills a day, and didn't express
any emotions--even when his mother died.  It is as though his
personality had been compressed and only the concentrate lived on. 
Rather like frozen concentrated orange juice!  The full extent of the
man I fell in love with became only a memory, and I had to keep
reminding myself that somewhere in there was the real Geoff. I didn't
always succeed in doing that.

Geoff and I were married for 31 years, and he was ill for nearly a
quarter of those years.  He was a good and honorable man, and I have
some wonderful memories.  Thymoma, though, sucks. It grows slowly while
the person diminishes just as slowly. Relationships also diminish as the
cancer advances.  In the end, an amazing number of people turned out to
celebrate Geoff's life at his memorial. He would have been very
gratified. As we drove away from the funeral home I said, "It's done.
It's finally done." I felt as though I could breathe again.

My best regards to you both, and to all those going through this. My
email address is now anne112price@shaw.ca., and if patients and/or
caregivers would like to contact me I will do my best to give them the
benefit of my experience.

Anne